St Christopher's Home Care - St Christopher's Hospice

St Christopher's Home Care - St Christopher's Hospice St Christopher's Home Care - St Christopher's Hospice

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St Christopher’s Home Care Information for patients and their carers at home St Christopher’s Home Care St Christopher’s Hospice, 51-59 Lawrie Park Road, Sydenham, London SE26 6DZ Telephone 020 8768 4500 · www.stchristophers.org.uk

St Christopher’s Home Care

Information for patients

and their carers at home

St Christopher’s Home Care

St Christopher’s Hospice, 51-59 Lawrie Park Road, Sydenham, London SE26 6DZ

Telephone 020 8768 4500 · www.stchristophers.org.uk

St Christopher’s Home Care

Contents

Section one

General information

Introduction .....................................4

Professional care at home – who does what .....5

NHS continuing care..............................6

Frequently asked questions ......................7

Section two

Services available from St Christopher’s

St Christopher’s Home Care team ...............10

Financial help when you are sick .................12

The Anniversary Centre:

outpatient and day services .....................17

The Social Programme ..........................19

Arts therapies ..................................20

Complementary therapies .......................21

Physiotherapy and occupational therapy ........22

Emotional and psychological care ...............23

Spiritual and religious care ......................24

Psychiatric support .............................25

Admission to the hospice .......................26

Travelling to the Anniversary Centre .............27

St Christopher’s Hospice location map...........28

Section three

Carers

Carers ..........................................29

Young carers ....................................31

Financial help when you are a carer ..............33

Some resources for carers .......................35

Section four

Physical needs

Eating and drinking .............................38

Washing and skincare ...........................39

Mouthcare .....................................40

Mobility ........................................41

Section five

Troubling symptoms and physical changes

Anxiety .........................................43

Depression .....................................44

Pain ............................................46

Medicine safety .................................47

Morphine ......................................48

Breathlessness ..................................50

Nausea and vomiting ............................51

Constipation ...................................52

Syringe drivers ..................................53

Section six

Bereavement

What to expect as death approaches ...........54

What to do after the death .....................55

Bereavement support ...........................56

Section seven

Feedback and policies

Discharge policy ................................58

Supporting diversity ............................59

Cardiopulmonary resuscitation (CPR) ............60

How to make a complaint ......................62

Your experience of our care ....................63

No part of this document or its contents may be copied or reproduced by any means without the express permission of St Christopher’s Hospice. © St Christopher’s Hospice September 2012. All rights reserved.

St Christopher’s Home Care

Introduction

This booklet has been put together for people who are unwell at home and for those caring for them.

St Christopher’s Home Care Service began in 1969 so that, whenever possible, people who are seriously ill can

be supported to remain in the comfort and familiarity of their own homes. It was the first service of its kind in

the world and today is setting the highest standards of care for people at home.

St Christopher’s Home Care Service consists of a team of nurses, doctors and social workers for each of the

areas we cover. Our teams work in the London boroughs of Bromley, Croydon, Lambeth, Lewisham and Southwark.

A St Christopher’s Nurse Manager oversees the service and the hospice provides administrative support to help

you get the best quality of care.

Other members of the St Christopher’s team who can offer support are welfare officers, physiotherapists, an

occupational therapist, chaplains, complementary therapists, a dietician, speech therapist, psychiatrists and

bereavement support volunteers. Please ask your St Christopher’s nurse for more information.

After you have been referred, one of our clinical nurse specialists will see you at home to assess your needs. You

will be offered subsequent appointments in the clinic suite of our Anniversary Centre. If you are not able to

manage the journey to the Centre your nurse will see you at home.

We look forward to welcoming you to the new Anniversary Centre where you can enjoy the relaxed and friendly

atmosphere and see first hand the wide range of individual and group activities on offer as part of the Anniversary

Centre programme. You can find details of these starting on page 17.

Our services are aimed at supporting you and your close friends and family throughout your illness with any

issues that arise and are important to you. These can be the physical aspects of your illness, its emotional, social

or spiritual impact on your life, and on those close to you.

There is no charge to patients and their families for any of our services. St Christopher’s is a local charity funded

by the local community for people in the London boroughs of Bromley, Croydon, Lambeth, Lewisham and

Southwark. It receives some funding from the NHS locally but depends on voluntary donations, fundraising and

legacies to continue its work. St Christopher’s strengths and achievement are a direct result of the generosity of

people in our community – patients, family and friends, organisations, groups and companies. Over 70% of our

income comes from the community. If you would like to make a contribution, it will help us continue our care

for others.

If you are interested in finding out more about activities to support the work of St Christopher’s further information

is available at the back on this pack, or you may like to contact the Fundraising team by telephoning 020 8768

4575 or by emailing fundraising@stchristophers.org.uk

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© St Christopher’s Hospice September 2012. All rights reserved. No part of this document or its contents may be copied or reproduced by any means without the express permission of St Christopher’s Hospice.

St Christopher’s Home Care

Professional care at home – who does what

The St Christopher’s Home Care team

We offer a support and advice service for patients at

home with advanced illness, and their carers (friends,

family and professionals involved in your care). The St

Christopher’s Home Care team has specialist nurses

(with whom you will have most contact), doctors and

social workers, as well as other professionals who you

may see according to your needs.

We work in conjunction with the other health care

professionals in the community. Below is information

about some of them that you may meet.

General practitioner (GP)

Your GP remains in charge of your care at home.

With your agreement, we can discuss possible changes

in your care with your GP and advise about symptom

control. The GP will continue to prescribe medications.

District nurses

The district nurses visit to offer some nursing care and

support. They are unable to provide all physical care

to everybody and may refer to Social Services if that

is more appropriate. You may also come across nurses

known as community matrons.

Social Services carers

If you need personal care rather than nursing, then

Social Services will arrange carers to provide this.

These carers will help with housework and meal

preparations, but only if they are giving personal

care as well. Such care will be arranged by a care

manager. You may need to pay for some of these

services; your attendance allowance or disability living

allowance is designed to help with these costs. Let

your St Christopher’s nurse know if you are not

receiving one of these allowances.

Hospice at Home

St Christopher’s also has a team of nurses who can

provide extra hands-on care in the last days of life.

Overnight care

When people are very ill at home, there may be a

need for a nurse or carer to stay in the home

overnight. St Christopher’s or the Primary Care Trust

(PCT) will book these. These nurses can sometimes

come from another charity like Marie Curie. Your

St Christopher’s nurse or district nurse can arrange it.

These decisions are made by the PCT.

Community occupational therapists

Occupational therapists can arrange for equipment

to be delivered to your home to help you with day

to day tasks. Such equipment includes bath aids, stair

rails and specialist chairs and beds. Ask your district

nurse or St Christopher’s nurse.

Community physiotherapists

Referrals can be made for a community physiotherapist

to visit at home. They can provide advice on

everyday tasks such as getting in or out of chairs or

cars, balance, co-ordination, mobility and breathing

difficulties.

Private agency nurses/carers

If you feel you need more help, there are agencies who

offer private nursing care that you would need to pay

for. These agencies can supply nurses or carers day or

night.

St Christopher’s Home Care

NHS continuing care

St Christopher’s patients are often eligible for ‘NHS

continuing care’. NHS continuing care is the name

given to a package of care which is arranged and

funded solely by the NHS for people not in hospital

who have ongoing healthcare needs. You can receive

continuing healthcare in any setting, including

your own home or a care home. NHS continuing

healthcare is free, unlike help from social services

for which a financial charge may be made depending

on your income and savings.

In your own home, continuing care means that the

NHS will pay for healthcare and personal care, for

example, help with bathing, dressing and some ‘night

sits’. In a care home, the NHS also pays for your

care home fees, including board and accommodation.

Eligibility for continuing care is not dependent on a

particular disease, diagnosis or condition, nor on who

provides the care or where that care is provided. If

your overall care needs show that your primary need

is health-related and includes a rapidly progressing

condition, you should qualify for NHS continuing

healthcare. Once eligible for NHS continuing

healthcare, your care will be funded by the NHS.

This is subject to review, and should your care needs

change the funding arrangements may also change.

To assess whether your primary need is health related,

all of your care needs are looked at and then related

to four key indicators – the nature of your needs, their

complexity, their intensity and unpredictability.

Applications for NHS continuing care can be made by

your St Christopher’s nurse. You will be able to play a

full role in the assessment of your needs and the

decision making process. There will be support

available to do this if required. Several people from

the St Christopher’s Home Care team involved in your

care may also contribute to this assessment. On the

basis of the assessment a recommendation will be

made to the NHS Primary Care Trust and a decision

will be made by a panel of experts at the PCT.

Sometimes, if you are very unwell, it may be possible

for the nurses to use a ‘fast track’ process in which

case the PCT will arrange for care as quickly as

possible.

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St Christopher’s Home Care

Frequently asked questions

Who has referred me to St Christopher’s and why

You will have been referred to us either by your GP,

your hospital doctor, or your district nurse so that

you can benefit from the expertise of St Christopher’s

to improve your quality of life and support you and

your family during your illness.

Where does my GP fit into this

Your GP remains responsible for your care at home

even if the hospice is involved. St Christopher’s nurses

work very closely with your GP. After we have

discussed it with you, we always talk to your GP about

any changes in your medication as he/she remains

responsible for writing prescriptions.

Do St Christopher’s nurses take over from the

district nurses

No. The district nurse may be involved with your nursing

care, and if so will work with the St Christopher’s

nurses to provide the best all-round care for you and

your family. The St Christopher’s nurses focus on

symptom control, support and advice, and help to

co-ordinate your care.

How often will I see the St Christopher’s nurse, and

will I always see the same person

Frequency of appointments will depend on your

needs. Appointments will be agreed with you in

advance and wherever possible you will see the same

nurse.

What happens if I need help out of hours

From 5pm to 8am a telephone advice and visiting

service is available for very urgent problems that

cannot wait until the morning. This might be

a St Christopher’s nurse you have not met

before. However, you can be assured that he/she will

have details of your illness and will be able to help

you.

Can I see a St Christopher’s doctor

Yes, some people come to see a doctor at the

St Christopher’s outpatient clinic but if you are too

unwell to travel, a St Christopher’s doctor can visit

you at home.

What are the arrangements for discharge

If your symptoms stabilise and there are no

outstanding problems we can help you with, the

St Christopher’s nurse will discharge you from the

service. If you need our help again, your GP or district

nurse can always re-refer you.

Will I be able to come to St Christopher’s as an

inpatient if I need to

We will do everything we can to make sure a bed is

available for you if you need one. If a bed is not

immediately available, your St Christopher’s nurse will

talk to you about arranging extra help at home until

it is possible to come into the hospice.

What information does St Christopher’s hold about

me

We receive a lot of personal information about you

from you, your family and other services. We need

this information so that we can provide you with

proper care and treatment.

Members of the hospice team looking after you may

share your personal information with each other. This

team may include nurses, doctors, therapists,

pharmacists and clerical support staff plus students

and trainees in medicine or other health and social

care professionals who are looking after you.

How your records are used to help you

All hospice health and social care professionals

involved in your care need to have accurate and upto-date

information to assess your condition and to

give you the best possible treatment and care.

St Christopher’s Home Care

Your records allow us to review the care we provide

to make sure it is of the highest possible standard and

meets all your healthcare needs.

We may need to share information about you so we

can all work together for you

Members of the hospice team looking after you may

share with each other, for example, details about you

and your family’s contact details and notes and reports

about your health and the care you need.

Often it is necessary to share your information with

professionals in other services who may be directly

involved with your care or if you need treatment

elsewhere. Your information will only be made

available if there is a genuine need to do so. Such

professionals might, for example, include GPs,

ambulance services, social care services.

You may ask for your information to be transferred

to another service, and we will always agree to transfer

the information requested, unless there is a good

reason why we cannot. If so, we will explain the reason

fully to you.

We will not share information about you with your

family or friends without your consent.

Sometimes we have to pass on information by law.

For example:

• finding an infectious disease that may endanger the

safety of others

• where a formal court order has been issued

• information about you may be shared if you are

involved in an emergency situation or

• in response to a formal written request by you or

your legal guardian.

How you can help us to make sure we always hold

the correct information about you

You can help us by:

• giving our staff the right details about yourself

and

• letting us know if any of your details are not right

or have changed since your last visit.

How your records may be used to help the hospice

Your records allow us to review the care we provide

to make sure it is of the highest possible standard and

meets all healthcare needs.

Some information we hold may be shared with other

professionals or organisations. For example:

• to train and teach health and social care professionals

or

• to provide statistical information to national

organisations with legitimate interests in healthcare

and its management.

When we use your records in this way, we remove or

disguise identifiable personal information about

you wherever possible.

If removal of identifiable personal information is

not possible, we will ask you directly for your consent

to disclose it. Your decision can be given verbally or

in writing. Your wishes regarding this information will

be respected.

How we keep your records safe and confidential

Everyone working for the hospice or who receives

information from us has a legal duty to keep

information about you confidential.

They are monitored by the Caldicott Guardian, a

senior clinician responsible for ensuring that patients’

rights to confidentiality are respected.

8

St Christopher’s at Home

Our data protection officer ensures our information

security and compliance with the Data Protection Act

1998.

How long does the hospice keep health records

We keep most records for eight years, unless the law

requires them to be kept for longer.

If we are told about a formal enquiry or legal action,

we will keep the records until they are no longer

required.

Your information rights

You have the right to:

• Know how we will use your personal information.

That is what this leaflet aims to let you know.

• Access your medical records – the ‘right of access

to personal data’. If you want to do this, please talk

to one of the hospice nurses or doctors responsible

for your care. Most of our records are electronic and

either one of our staff can help see your notes on

a hospice computer or we can arrange for a paper

record, but this may take a few days.

• Object to us making use of your information.

• Ask us to change or restrict the way in which we use

your information. We are obliged to agree if it is

possible to do so.

• Include any corrections you want to make in the

record.

Who do I contact if I would like to know more or

have concerns

If you would like to know more about how we use

your information, or if you have concerns about it,

please speak to one of your hospice nurses or doctors.

Alternatively, you can contact the Caldicott Guardian

or the data protection officer by writing to them at

the hospice.

All the information we hold is held confidentially and

we comply with the terms of the Data Protection Act

and other legislation and government guidance. We

will not disclose any personal information about you

without your agreement or without the required legal

authority to do so.

Will there be support for my family if I die

Yes. Our team is here to support you and your family

at every stage, and St Christopher’s has a bereavement

service.

If I were to die, is there any way that I could donate

any part of my body to help others

Yes. It is often possible to help others after your death

by donating organs or organ tissue. Please discuss this

with your St Christopher’s nurse if you would like to

help others in this way. There is a separate information

leaflet about this subject which you may like to read.

St Christopher’s at Home

St Christopher’s Home Care team

St Christopher’s nurses

Our team consists of several specialist nurses who

work with you to arrange your care. You will have a

named nurse who will be your main point of contact.

Our role is to offer you support and advice regarding

the control of troubling symptoms and any issues that

you or your family or friends face on an emotional,

psychological, social or spiritual level.

Our specialist nurses do not usually provide handson

care. This is provided either by district nurses or

Social Services. Many of our nurses are non-medical

prescribers. This means they can speed up new

medication if required.

The nurses in the team take turns to provide the

out of hours service so, at those times, it may be any

one of the team that you would have contact with.

Your St Christopher’s nurse will have information

about you and should be able to help.

St Christopher’s doctors

Our nurses work closely with the doctors at the

hospice to ensure that you receive the best possible

medical care for any troubling symptoms and can

arrange for you to attend a clinic at the hospice as an

outpatient, or for a doctor to visit you at home if you

are not well enough to come into the hospice.

Once our St Christopher’s doctor has met you and

talked through how you would like to progress your

care, he/she will discuss the situation with your GP

and arrange new medications for you if necessary.

St Christopher’s social workers

A St Christopher’s social worker is available to listen

carefully to any emotional or practical concerns you

may have, and to help and support you and your

family in finding ways to live with the changes that

illness brings. These may be changes involving home

or work, or changes in personal or family relationships.

The help that the social worker can offer includes:

counselling; information and advice about other

resources and help available in your local community;

providing opportunities to meet with others in

a similar situation; and helping you to support

your children or grandchildren who may be

experiencing their own difficulties coming to terms

with your illness. Further information can be found

on page 23.

Welfare officers

Our welfare officers can help with some of the

financial and practical issues that may arise.

You may have worries about unpaid bills, extra

expenses or a reduced income. You and your carers

may be entitled to extra benefits because of your

illness. The welfare officers can help with benefit

claims, grant applications and sorting out debts.

The welfare officers can help get grants for special

needs you may have and can give advice and support

about holidays. They can help with applications for

disabled car badges or other transport services,

emergency alarms and other services in your home,

including installing a telephone if you do not have

one.

The welfare officers can also help on housing issues,

for example, getting support for transfers or dealing

with repairs. They can discuss getting a solicitor for

legal help (making a will, power of attorney etc). They

may also be able to help if caring for your pets is a

concern.

The advice provided by our welfare officers is totally

confidential.

You can contact the welfare officers through your

St Christopher’s nurse or you can ring the welfare

office on St Christopher’s main number – 020 8768

4500.

10

© St Christopher’s Hospice December 2009. All rights reserved. No part of this document or its contents may be copied or reproduced by any means without the express permission of St Christopher’s Hospice.

St Christopher’s Home Care

Hospice at Home team

St Christopher’s Hospice at Home team is a small team

of nurses that provides support for families and handson

care for patients who wish to remain at home in

the last days of life.

Hospice at Home works alongside each patient’s GP,

district nurse and St Christopher’s specialist nurses.

The service provides care during the day and can be

booked through your St Christopher’s nurse or district

nurse. Hospice at Home nurses usually stay at your

home for a minimum of three hours. St Christopher’s

does not charge for this service.

Other members of the team

There are other members of the team – such as a

physiotherapist, occupational therapist, psychiatrist,

speech therapist, dietician, chaplain, and arts therapists

– whom your nurse can also arrange for you to see at

one of the outpatient clinics.

St Christopher’s Home Care

Financial help when you are sick

The Welfare Department is available to help you

get the financial help to which you are entitled.

Below is a list of benefits you could be entitled to.

These benefits are not charity – they are your right.

We hope that the following information is clear, but

if you have any questions or you need help getting

any claim forms, please telephone the hospice and

the welfare officers will be happy to advise you

further. You can contact the Welfare Office between

9am and 5pm, Monday to Friday on 020 8768 4500

(main switchboard).

Benefits you may be able to claim as a patient of

St Christopher’s

Attendance Allowance (AA)/Disability Living

Allowance (DLA) / Personal Independence Payment

(PIP)

Attendance Allowance is paid to people aged 65 and

over who need help with personal care (ie help with

washing, dressing etc).

Disability Living Allowance (DLA) is paid to people

under 65 who need help with personal care. There

is also an additional mobility component of DLA if

you have difficulty getting around. DLA will continue

to be paid after age 65 if you have a pre-existing

entitlement. Please note: the Government intends

replacing DLA with a new benefit called Personal

Independence Payment from April 2013.

These benefits are tax-free and paid on top of any

other benefits, sick pay or pensions you may be

getting. They can also be paid if you are still working.

Getting either AA, DLA or PIP may mean that you are

automatically entitled to other benefits.

Special rules for claiming Attendance Allowance and

Disability Living Allowance

There are special rules for people who have an

uncertain future because of their illness and people

referred for hospice care, whether as an outpatient

or an inpatient, may have an automatic right to claim

the highest rates of AA or DLA for personal care under

the special rules. If you are not already getting the

highest rates, let your St Christopher’s nurse know and

he/she will help make the claim if the special rules

apply or refer you to the Welfare Office if you need

to make a claim under the usual rules.

Benefits paid if unable to work through sickness

If you are employed but off sick you will be paid

Statutory Sick Pay as part of your wages/salary for the

first 28 weeks you are off work. You may also be

entitled to Income Support to top this up if you have

a low income and savings under £16,000. When the

Statutory Sick Pay ends you should claim Employment

and Support Allowance from the Department of

Work and Pensions.

Employment and Support Allowance

Employment and Support Allowance (ESA) is paid if

you are under pension age and unable to work

because of illness and your statutory sick pay has

ended or you are not entitled to it. You will continue

to get Incapacity Benefit topped up with Income

Support instead of ESA if you had started claiming

it before October 2008.

You may get extra work sick pay or superannuation

on top of any Statutory Sick Pay, Employment and

Support Allowance or Incapacity Benefit depending

on your employer.

If you are self employed or unemployed you should

claim ESA straight away.

If you have paid enough National Insurance

contributions in the three years before your claim you

are entitled to a basic amount of contributory ESA

which is not affected by any savings you have or

the income of any other members of your family. The

12

St Christopher’s Home Care

amount you receive may be affected by any work

pension you get.

In addition to the above, you may qualify for incomebased

Employment and Support Allowance if your

income is low and you have savings under £16,000.

The amount you get depends on your family

circumstances and any other income and savings.

Getting income-based Employment and Support

Allowance (or Income Support) may also entitle you

to other types of help, such as free prescriptions and

dental treatment, home improvement grants, and help

from the social fund.

You can claim by ringing the new claims call centre on

0800 055 6688 or contact one of St Christopher’s

welfare officers who have claim forms available.

Industrial Injuries Benefits and compensation

If you have mesothelioma or another illness caused

by contact with asbestos, you may be entitled to

Industrial Injuries Disablement Benefit and

compensation, paid in addition to some of the

benefits above. Please contact one of our welfare

officers.

Free prescriptions

If you are claiming income-based Employment and

Support Allowance, Income Support, income-based

Job Seekers Allowance, or in certain circumstances

Working Tax Credit or Child Tax Credit, or if you are

aged over 60, you can get free prescriptions by ticking

the appropriate box on the back of the prescription

forms.

If you are under age 60 and do not qualify for free

prescriptions through one of these routes, you may

qualify for exemption from charges on medical

grounds. This includes any cancer diagnosis. You will

need to claim an exemption certificate.

Ask your St Christopher’s nurse and he/she will help

make the claim.

Blue badge parking concessions

You will qualify for a blue badge if you get the high

rate of the mobility component of Disability Living

Allowance, are blind or deaf, and/or have difficulty

walking outdoors and your GP confirms this.

Applications are made through your local authority

disability services or you can ask your St Christopher’s

nurse for an application form. Some local authorities

make a charge of £10 for the badge.

If you display a blue badge in a car you are driving

or being driven in this means that you are entitled to

parking concessions. You can park in places reserved

for disabled people and may be eligible for free or

reduced parking charges where these are shown to

be available to blue badge holders.

If you are a blue badge holder you may also apply for

an exemption from the London Congestion Charge.

This costs an initial £10, but is free on renewal. You can

apply for exemption by calling 0845 900 1234 or apply

online at www.cclondon.com

Freedom Pass – free travel on buses and trains in

London

All London councils run a scheme for people with

disabilities in their borough to get a free pass which

covers all London transport. People over pension age

will be entitled to the older person’s pass.

You will qualify for a disabled person’s pass if you get

the high rate of the mobility component of Disability

Living Allowance or if your GP confirms that you have

difficulty walking outdoors.

Contact your local authority disability services for an

application form. It can take a few weeks for the claim

to be processed especially if you are not getting the

higher rate of the mobility component of Disability

St Christopher’s Home Care

Living Allowance and the authority then needs to get

a report from your GP.

Taxicard

People who live in London and get the higher rate of

the mobility component of Disability Living Allowance

or whose GP confirms that they have difficulty

walking out of doors and/or using public transport

will also qualify for a Taxicard.

With Taxicard you can get a taxi and pay a flat fare (on

average about £2.50 a journey) as long as the meter

charge for the journey is less than a certain amount.

If the meter charge for the journey is above the set

limits, the additional amount will be charged. There is

a set number of journeys allowed under the scheme.

Applications can be made through your local authority

disability services or by contacting 020 7934 9791 or

by visiting their website at www.londoncouncils.

gov.uk/services/taxicard, or you can ask your

St Christopher’s nurse for an application form.

Dial-a-Ride

You can join the London door-to-door Dial-a-Ride

scheme if you get the high rate of the mobility

component of the Disability Living Allowance or if your

GP confirms that you have substantial difficulty walking

outdoors.

You usually have to book in advance so it cannot be

used for emergencies. The fare will depend on the

distance travelled. You may be travelling with other

people so your journey may take longer so that they

can be picked up or dropped off.

Some local authorities have their own extra schemes

as well as Dial-a-Ride.

Working Tax Credit

If you (or your partner if you have one) are still working

for 16 hours a week or more or getting Statutory Sick

Pay and you are on a low income you may be able to

claim Working Tax Credit to help top up your

wages. The amount you get depends on your income

(as well as that of your partner, if you have one). Your

entitlement should increase as a result of your illness.

Contact the Tax Credits Helpline for a claim form.

Child Tax Credit

If you have a dependent child or children you may be

able to get Child Tax Credit. Some families will already

be claiming this, but if the family income has dropped

as a result of your illness you may be entitled to more

Child Tax Credit. Contact the Tax Credit Helpline to

make a claim or to inform them of a change in

circumstances.

Pension Credit

Male and female carers over women's pension age

may be entitled to Pension Credit to top up their

income. Even if you have savings or an occupational

pension, you might still qualify for some Pension

Credit if your income is low enough.

Getting Pension Credit may also entitle you to other

types of help, such as free dental treatment, optician’s

services, home improvement grants if you own your

own home, and help from the social fund.

The amount you get depends on your income

including other benefits. Contact the Pension Credit

application line on 0800 991234 to make a claim.

Housing Benefit

If you are finding it hard to pay your rent, you may be

eligible for Housing Benefit. You can apply online or

your housing officer or local council offices will be

able to send you the relevant application form.

Anyone on a low income can apply for Housing

Benefit as long as their savings/capital are less than

£16,000 or they are getting pension credit.

14

St Christopher’s Home Care

Council Tax

If you are on a low income with savings under £16,000,

you can apply for Council Tax Benefit to help with

Council Tax payments. This can be up to 100% for

those on very low incomes. In circumstances where

particular alterations have been made to the home

council tax discounts may be available – check

these out with St Christopher’s welfare officers.

If you are living permanently in a hospital, nursing care

home, residential home, private hospital or hostel,

are receiving care or treatment there, and have

no other home, then you do not have to pay Council

Tax.

Extra items

If you are on income-based Employment and Support

allowance, Income Support or Pension Credit

(Guarantee Credit) sometimes the Department of

Work and Pensions will help with extra expenses in

the household when someone is ill.

Some charities can help as well, but this will depend

on how much money you already have. Please contact

the hospice welfare officers for further information.

(As a guideline we are only able to obtain such

assistance for those who have savings under £6,000

as a single person or £8,000 as a couple).

Travel costs to receive NHS treatment

If you:

• get Income Support, income-based Jobseeker’s

Allowance, income-related Employment and

Support Allowance or Pension Credit (Guarantee

Credit) or

• qualify for help with NHS costs because you have

a low income and have applied for HC2 certificate

or

• have an NHS Tax Credit exemption certificate

because you get a high rate of Tax Credits

you can claim a full refund on your travel costs to get

NHS treatment.

The amount refunded will be the cost of the cheapest

means of travel available to you.

In order to have taxi fares paid, you will need proof

from your GP that you cannot travel by public

transport if this is the case. They will also pay the cost

of an escort if your GP confirms that this is necessary.

You may get some costs covered if you hold an

HC3 certificate which is issued to people whose

income is low, but not low enough to qualify for an

HC2 certificate.

You should be able to find out how to apply for a

refund at the hospital where you are receiving

treatment. This scheme does not apply to treatment

received at the hospice.

Benefits for people looking after you

Carer’s Allowance

Someone who is helping to look after you may be

able to claim Carer’s Allowance if you are getting

either DLA for personal care at the higher or middle

rate or Attendance Allowance at either rate. To get

Carer’s Allowance your carer must be over 16 and

spending at least 35 hours a week caring for you. Your

carer cannot get Carer’s Allowance if they study full

time or are earning more than a set amount per week.

If your carer already receives certain benefits, eg State

Retirement Pension, they may not be paid Carer’s

Allowance as well. However, if they claim Carer’s

Allowance and are awarded an underlying entitlement,

they could qualify for extra additions on other topup

benefits, eg income-based Employment and

Support Allowance, Pension Credit, Income Support,

Housing Benefit and Council Tax Benefit.

Your carer can get Carer’s Allowance whether they

live with you or not. However, if they live elsewhere

St Christopher’s Home Care

and you live alone, are the only adult in your home or

live with other adults who are all getting Attendance

Allowance or Disability Living Allowance, you may

be better off if your carer does not claim Carer’s

Allowance. You should seek further advice in this case.

Top Up Benefits

If your carer has no other source of income, he/she

will be able to claim Income Support or Pension Credit

to top up their weekly income, and Housing Benefit

and Council Tax Benefit to help with rent and Council

Tax payments. In some cases if you are claiming as a

couple, you may be better off if your partner claims

Carer’s Allowance and Income Support for you both,

rather than claiming income-based Employment and

Support Allowance as a couple. Please seek advice.

Travel costs for carers to visit a member of the family

in hospital (this can include the hospice)

If your carer is getting Income Support, Income-based

Jobseeker’s Allowance, Income-related Employment

and Support Allowance or Pension Credit (Guarantee

Credit) they can get a grant from the social fund to

cover travel to visit – including overnight stays if

this is necessary. They may need to justify their

relationship to the person in hospital if they are not

a very close relative. Costs covered will be for the

cheapest means of transport but taxi fares will be

covered if they can show that they cannot travel by

public transport and an escort will be paid if this is

shown to be necessary.

Applications are made through your Jobcentre Plus

office.

Please note: all these benefits usually only apply if

you have no restrictions on your right to remain in the

UK. If you have an uncertain immigration status, please

ask for further advice.

You may also find the following phone numbers useful:

Benefit Enquiry Line (freephone)

0800 88 22 00

Tax Credits Helpline

0345 300 3900

Disability Living Allowance and

Attendance Allowance Helpline

0845 712 3456

Pension Credit Application Line (freephone)

0800 99 1234

New claims (income support, employment and

support allowance and job seekers allowance)

0800 055 66 88

Healthcosts customer enquiry line

0845 850 1166

16

St Christopher’s Home Care

The Anniversary Centre: outpatient and day services

The Anniversary Centre has been designed to

create a modern environment for St Christopher’s

patients and their families. Our aim is for you to be

able to access the services you need as easily as

possible, and the Centre is open from 8.30am to 9pm

every day. It is staffed by a clinical nurse manager

(CNS), health care assistants and volunteers. Patients

who regularly attend the Anniversary Centre will have

their care delivered by a team of CNSs who are based

in the Centre.

In the Centre you will find:

• a spacious social area

• a suite of consultation rooms for outpatients

• group rooms

• a bathing suite

• a rehabilitation gym

• a hairdressing salon and

• an information area with PCs and internet access.

Our day care services are also located here. You will

probably be offered an initial programme of 12

visits, after which your St Christopher’s nurse will

review your plan with you. We aim to be able to meet

most of your needs in one place. If your illness

stabilises and our services are no longer appropriate,

we will discuss discharge with you. You can also drop

in here and find out useful information, and use one

of the PCs to look at helpful websites. We encourage

you to bring along a family member or close friend.

Please discuss this with your St Christopher’s nurse

before you come.

Medication

Please bring any medication due to be taken duringthe

day with you and feel free to discuss any issues you

may have with your St Christopher’s nurse.

Café

While you wait for your clinic appointment or group

session, relax and enjoy a cup of coffee, tea, or some

café-style food.

Breakfast

Lunch

Tea

8.30am – 11am

12 noon – 2pm

3pm – 4pm

Light snacks are available at other times.

Consultation rooms

These rooms are for a range of appointments that

your nurse may make for you such as nursing, medical,

social work or welfare/finance appointments,

dietician, speech and language therapist, as well as

breathlessness or cognitive behaviour therapy clinics,

occupational therapy, complementary therapy, arts

and music therapy.

Bathing suite

Baths are available for outpatients who need extra

help bathing and for those who want to have a

bath with help at hand should they need it. If you

would like to make use of this facility, please discuss

it with your St Christopher’s nurse.

Rehabilitation gym

This new purpose-built gym aims to help people

maintain their strength through gentle exercise. It is

available for individual appointments with a

physiotherapist, and for general use between 11am and

1pm under the supervision of a physiotherapist.

Hairdressing salon

We have a professional hairdresser who is available

for patients. There is a small charge for this service.

The hairdresser can also give advice on how to

manage hair loss due to treatment. Please speak to

your St Christopher’s nurse.

St Christopher’s Home Care

Information

The Centre offers advice and up-to-date information

about a number of areas of interest to patients coping

with serious illness and their carers. This includes a wide

range of printed leaflets written by St Christopher’s

clinical staff, and other publications such as Macmillan

booklets on dealing with aspects of cancer, literature

from the MND Association, the MS society and others.

Some of the information is available in other formats

(taped recordings). If you wish you can access the

internet, and talk to one of our team of trained

volunteers who will be able to direct you to the

information you might need.

Group rooms

A group programme covering a wide range of topics

is published regularly and is available from the centre

reception desk. If you or your carer is interested in

joining any of these, just speak to your St Christopher’s

nurse. The group programme includes:

• support groups

• practical groups about subjects such as managing

your finances, or healthy eating

• relaxation and ‘look after yourself’ groups

• bereavement groups and Candle (child bereavement)

groups

• self-help groups

• fatigue and breathlessness groups

• circuits and pilates groups

• lymphoedema management groups and

• creative and therapeutic groups (see below).

A creative group programme runs Monday to Friday,

with sessions generally starting at 11am and finishing

at 12.30pm. The groups are run in eight-week blocks,

but you can join one at any time. Although they vary

in content, they include activities such as:

• pottery

• painting

• writing

• music

• arts and crafts

• digital art

• life story work and

• photography.

Travelling to and from St Christopher’s

Please see page 27 for information about travelling to

and from St Christopher’s.

18

St Christopher’s Home Care

The Social Programme

The Social Programme at St Christopher’s brings

together hospice users and the local community.

Many are afraid to visit a hospice and are

uncomfortable talking about death and dying. The

Social Programme aims to change this and show that

St Christopher’s is about community and sharing good

times together.

All these events are planned in order to offer

opportunities to dispel myths and change perceptions

– both about St Christopher’s and the people who

use our services. No booking necessary – just come

along to the hospice and bring your friends! Everyone

is most welcome to join us. Look out for other social

events on our website at www.stchristophers.org.uk

St Christopher’s Community Choir and Pizza Night

Every Monday evening 7-9pm

With no auditions, anyone of any age is welcome to

come and sing with us in a relaxed, informal way –

switch off from the stresses of life and have some fun.

We offer a wide and varied repertoire from many

different styles and cultures across the world, leading

to regular performances.If you would just like to listen

to us rehearse, reasonably-priced pizza and side dishes

are available from the Anniversary Centre café 6-9pm.

St Christopher’s Curry and Art Night

Every Tuesday evening 7-9pm

Enjoy a good curry for a reasonable price, with a varied

menu and good company. Come along and join in a

range of activities such as photography, story

telling, etc.

Please note: although we do not have a license to sell

alcohol you are welcome to bring your own to enjoy.

St Christopher’s Quilting Group

Every Wednesday evening 7-9pm

This group focuses on learning the craft of quilting

– an ancient activity which focuses on having fun,

remembering and creating a legacy.

If you would like to make your own quilt, create

one in memory of someone you love who has died

or just learn to quilt for fun, please come along and

join us.

Refreshments are available from the Anniversary

Centre café.

Dame Cicely Saunders Concert Series

First Thursday of the month 7.30-9.30pm

A range of highly-skilled professional musicians from

around the world play a variety of exciting

programmes. Please contact St Christopher’s for a

concert brochure or to reserve seats – or visit our

website for listings.

Reasonably-priced tickets include wine and canapés

during the interval.

Open House Hospice Friday Visits

Selected Fridays 9.45am-2pm

Our free monthly Friday visits include a hospice

tour and provide the history of hospices and palliative

care, and information about the services that we offer

for ill, dying or bereaved people. Visit includes a

sandwich lunch.

Please note: all Friday Visits must be pre-booked by

calling the Education Centre on 020 8768 4656.

Sunday lunch at St Christopher’s Hospice

Every Sunday afternoon 12-2.30pm

A delicious three-course, reasonably-priced traditional

lunch is served every Sunday in the Anniversary Centre

café.

This much-enjoyed regular event also offers a broad

range of live music. Come along for a relaxed and

informal social occasion.

St Christopher’s Home Care

Arts therapies

Art and music therapies are available from the

Anniversary Centre either through the group

programme, individual appointments (including on

the inpatient unit) or at home. Just ask your

St Christopher’s nurse if you are interested in

finding out more. Our music and art therapists are

registered to practise with the Health Professions

Council.

Art therapy

Art therapy sessions provide an opportunity to

explore painting and art materials with the therapist.

The therapist provides materials which are simple and

easy to use. Self-expression is the key and no prior art

skills are needed. Art therapy is particularly useful for

people who find it difficult to communicate using

words and have strong feelings that they need to

express.

Music therapy

Music therapy sessions provide creative possibilities

where you can explore improvised music-making and

other musical activities with the music therapist. The

therapist brings a collection of instruments, which are

all easy to make sounds with. Some of the instruments

have been specially adapted for people who might

otherwise find them difficult to use. You can use your

voice, with or without words. If you are unable to use

your voice or to make sounds, music therapy can still

be beneficial. The therapist is able to create music,

either through improvisation, or with specially

selected familiar songs. The flexibility of improvised

music-making can facilitate and encourage interaction

if you are feeling lonely and withdrawn or depressed.

Music can also be a release if you are experiencing any

form of communication problem.

20

St Christopher’s Home Care

Complementary therapies

Complementary therapies work alongside other

treatments, they aim to promote relaxation and

induce feelings of wellbeing which can help you cope

with the stress of illness. All our complementary

therapists are experienced in palliative care.

Complementary therapies are available for patients

and their carers and include massage, aromatherapy,

reflexology, hypnotherapy and relaxation.

How can complementary therapies help you

They are pleasant and enjoyable and can:

• create a feeling of relaxation

• reduce stress and tension

• ease aches and pains

• help lift mood and reduce anxiety

• create valuable time for yourself and

• help improve sleep.

What is massage

Massage is soothing and calming not only to the

nervous system and muscles but also the emotions.

Massage encourages the body to let go of tension

and experience relaxation. The therapist may use plain

oil or use massage techniques that allow you to

remain clothed.

What is aromatherapy

Aromatherapy combines the gentle rhythmical effects

of massage with the added benefit of pleasant

smelling essential oils. These oils are extracted from

flowers, herbs, fruits and trees. Their effects can be

uplifting and revitalising or calming and relaxing.

What is reflexology

Reflexology is a specialised form of massage on the

feet and hands. It enhances relaxation by focusing

attention on the nerve endings in those areas. No oil

is used in reflexology, but a little talc or cream is

applied to feet and hands.

What is hypnotherapy

Hypnotherapy induces a relaxed daydream like state

between waking and sleeping. The hypnotherapist will

guide you into that relaxed state and then use positive

suggestions to help you deal with whatever problem

or symptom you may have. You are always aware of

what is happening and remain in control throughout

the session.

Relaxation techniques

These are offered in groups or individual sessions,

to help you relax your body and mind, using your own

imagination guided by the therapist.

Want to try a complementary therapy

Please tell a member of staff involved in your care if

you would like to try aromatherapy, massage,

reflexology or hypnotherapy. Therapies are offered

as a programme of four sessions, usually weekly.

The therapist will then review your sessions with you.

It may be possible to continue with some therapies

on a less frequent basis. It is occasionally possible to

offer therapies at home according to need.

All these therapies are offered free of charge, however

donations are always welcome.

Physiotherapy and occupational therapy

St Christopher’s Home Care

St Christopher’s rehabilitation therapists help you to

maintain independence and gain relief from distressing

symptoms.

How can physiotherapy help

Individual exercise programmes sometimes with

specialist equipment can help to strengthen weak

muscles, ease stiffness and lead to increased mobility.

Problems of balance or co-ordination may also be

helped by physiotherapy.

Patients and carers may benefit from advice on the

easiest and safest ways to achieve everyday functional

tasks such as getting in and out of a car, transferring

from bed to chair.

Physiotherapy may help in the management of

breathlessness, for example by teaching relaxation and

other advice to help with breathing, posture or coping

with reduced energy.

It can help with pain relief in a number of ways. For

example, advice on positioning and movement,

heat or ice, massage and the use of special electrical

equipment.

Cancer or the effect of its treatment can cause

swelling of a limb. Compression hosiery or specialised

bandaging, a specialist massage or exercise and advice

may help.

How can I see a physiotherapist

You can ask to see a physiotherapist to discuss

whether treatment would help, or talk with your

St Christopher’s nurse or doctor.

Where will I see a physiotherapist

You will probably see the physiotherapist initially at

an outpatient clinic for an assessment. You will then

either be offered one-to-one physiotherapy or you

may be able to join in a small group session with

treatment carefully tailored to your needs. The

physiotherapist may also recommend a programme

of exercises in the rehabilitation gym under supervision.

Occasionally the physiotherapist may be able to see

people at home for a one-off appointment.

How often will I need to see a physiotherapist

You may only need to come once or twice, or you

may require a longer course of treatment.

How can occupational therapy help

The St Christopher’s occupational therapist helps you

to maintain your independence so that you can

continue to manage daily activities in your own home.

The occupational therapist can assist with a range

of functional difficulties relating to activities of

daily living, fatigue management and reduced levels

of energy, assessment for provision of equipment,

home adaptations and assessment for wheelchair

provision.

How can I see the occupational therapist

Your St Christopher’s nurse can request an

occupational therapy assessment either from the

St Christopher’s occupational therapist or the

occupational therapy service in your local authority

depending on what your needs are. They will contact

you to make an appointment.

Where and how often will I see the occupational

therapist

The occupational therapist will make an appointment

to assess you in your own home. This is usually a oneoff

assessment, with follow up either by phone or a

second visit. If your needs change the occupational

therapist can visit again.

22

St Christopher’s Home Care

Emotional and psychological care

Living with a serious illness can affect many aspects

of your life, including how you feel about yourself and

your relationships with other people. Both the person

who has the illness and those caring for them can find

that it helps to talk to each other about how they feel

about the changes in their lives. Sometimes you need

to talk about your sadness, anger or worries about

what has happened to you.

However, you may find it difficult to talk as openly

with each other as you would like to because you are

concerned about upsetting each other. You may find

yourself feeling alone with your experiences of

the illness. There are various different ways in which

St Christopher’s can help you with your concerns.

What emotional and psychological care does

St Christopher’s provide

Your St Christopher’s nurse will give you time to

talk about how you feel about what has happened.

The Anniversary Centre at St Christopher’s has various

activities which many people find helps them to feel

less alone with their illness. There is also a programme

of different groups including relaxation and support

groups.

St Christopher’s social workers have particular

expertise in helping with emotional or family

difficulties. It can be helpful to talk to someone who

is not personally close to you. The social worker can

see you on your own or with anyone you chose;

carers, family members or friends. They can help you

say things to those close to you that you want or

need to say. They can also help you to talk about

practical planning.

St Christopher’s has a psychiatry team, which has

expertise in helping people to manage particularly

difficult emotional problems arising from living with

a serious illness – see page 25.

Cognitive behaviour therapy (CBT)

Being diagnosed with a serious illness can be a

distressing experience both for patients and families

and can lead to people experiencing many different

feelings. It can affect your relationships and also revive

problems from the past. It is therefore not uncommon

to feel emotionally overwhelmed. CBT is brief

problem-focused therapy that can help people regain

a sense of control as well as identifying ways of coping

with their difficulties. The average course of CBT lasts

for between six and eight sessions and is provided by

a qualified CBT therapist.

Your St Christopher’s nurse can refer you to any of

the above services.

Children and young people

Children and young people also need help in

understanding the illness and its effects. Adults may

not talk to children because they are concerned about

protecting them. However, even very young children

can be helped to talk with their carers about their own

questions, worries and fears. The St Christopher’s

social workers can help you and your children or

grandchildren in having these conversations and give

you information about booklets and activities to

support you. The St Christopher’s social workers

can also help with planning for the future care of

children.

St Christopher’s Home Care

Spiritual and religious care

St Christopher’s welcomes everyone – whatever their

beliefs – and encourages people to feel free to express

their spirituality or practise their religion in their own

way.

St Christopher’s is committed to ‘total care.’ This

means that whatever is important for each individual

person matters to us. When you are seriously ill, you,

and those close to you, may have questions or

concerns which are just as distressing as the physical

symptoms of the illness. If you would find it helpful

to talk to someone, St Christopher’s nurses can share

some of those questions and feelings that may arise

when you are ill. If you wish, they can also arrange for

the hospice chaplain to contact you and arrange a

visit. Spiritual and religious care is available for

everyone using hospice services whether on our

wards, in the Anniversary Centre or at home.

The chaplain at the hospice works with clergy and

leaders from many faiths, denominations and religious

communities in the area. The chaplain can, if you wish,

arrange to visit you and your family at home informally

to meet any particular religious needs.

Please speak to your nurse if you think you would find

this helpful, or have any questions. If you are visiting

the hospice, you will find the Pilgrim room provides

a quiet space to think, meditate or pray. There are

books of poetry and photographs and faith texts you

may wish to use. You may light a candle or record your

thoughts in the large Memory Book on the table.

24

St Christopher’s Home Care

Psychiatric support

St Christopher’s psychiatrists can help with problems

such as anxiety, panic, depression or confusion.

They can also help with other more severe mental

health problems and can see the relatives of patients

at St Christopher’s if they are worried about how they

are coping.

Who can make a referral

Any of the nurses, doctors or social workers can make

the referral. They would discuss it with you first to see

whether it is what you want or not.

What should I expect if I am referred to see the

psychiatrist

Psychiatrists are trained as doctors who then do

specialist training in psychiatry. They usually see people

for between one hour to one and a half hours for the

first time (less if you are very tired or weak) and like

any other doctor want to know all about current

problems with symptoms. The symptoms may be

different (low mood or anxiety instead of pain or

breathlessness) but they take a history in much the

same way. To help them understand more about you

and how your illness is affecting you they may need

to ask you some personal questions.

Will they see me more than once

This depends. Sometimes they simply give their

opinion to you and the team and leave it at that.

Sometimes they see people for two or three more

sessions and occasionally offer help for longer. They

sometimes refer people on to other local services if

they think they can help and you would like the

support.

St Christopher’s Home Care

Admission to the hospice

Not everyone we look after is admitted to the hospice.

However, admission can be very useful sometimes

and may be suggested or requested for:

• symptom control – you may be admitted at any

stage for help with difficult symptoms. The aim

would be for you to go home once things have

settled

• end of life care – if, for whatever reason, this cannot

happen at home or in a local nursing home

• rehabilitation – short admissions will be considered

for people who require rehabilitation where it is felt

that the hospice can assist in the improvement of

health or independence.

Admissions procedure

All admissions are discussed in our weekday

admissions meeting at 10am on Monday to Friday. The

requests are prioritised and dates for admission

suggested. You will be informed at the earliest

possible time of the decision made. If required and if

possible an admission can be arranged for the same

day.

What to bring

You should bring with you:

• the tablets or medicines you are taking at present

• night and day clothes

• toiletries and

• a small amount of money (for newspapers, telephone

calls, etc).

What is provided

St Christopher’s provides:

• towels and

• food (please let staff know of any special requirements

– for example, if you want vegetarian food,

have religious dietary obligations or need a diabetic

diet).

Bed/room allocation

Our accommodation is in single rooms and four bedded

bays. Occasionally a patient in a single room may be

asked to move to a bay if we need to admit someone

else to a single room because of their particular

care needs.

Other facilities

Accommodation for family or friends

We have some accommodation for families to stay in

a small flat. Family members or friends are welcome

to stay at the bedside of patients who are very ill. We

have a riser/recliner chair at each bedside. Please

discuss this with the nurse.

Telephone and TV

Each bed has a telephone and can receive calls directly.

The cost of outgoing calls are the same as BT national

payphone rates. Each bed also has a TV with 17

channels and there is no charge for this facility.

26

St Christopher’s Home Care

Travelling to the Anniversary Centre

After you have been referred to our home care

services, one of our St Christopher’s nurses will

contact you and arrange to come and see you at

home for an assessment visit. For future appointments

they will invite you and any important family members

to come and see your nurse in one of our consultation

rooms in the Anniversary Centre. If at any stage you

find you are unable to make the journey here we will

visit you at home again. Your St Christopher’s nurse

will discuss with you the most appropriate location

for your appointment.

Public transport

Our transport resources are limited, so we do ask that

if possible you make your own travel arrangements to

and from St Christopher’s. We are well served by public

transport for those of you with bus passes. Routes 176

and 197 stop outside the hospice. Routes 122, 202 and

221 stop at either end of Lawrie Park Road. Routes 3,

75, 194 and 306 stop a 10 to 15 minutes walk away.

If you are coming by train, the nearest stations are

Sydenham for trains from London Bridge (which leave

every 15 minutes) and Penge East for trains from

Victoria (which leave every 30 minutes). When arriving

at Penge East from Victoria, cross over the footbridge,

turn right out of the station and follow Station Road

to the High Street. Turn right under the railway bridge

and take the first turning on the right into Lawrie Park

Road.

Private arrangements

If you are able to make your own arrangements to get

here, you may find it useful to know that there are

drop off facilities immediately in front of the main

entrance. We keep wheelchairs at reception and staff

can help you into the building. There is some free

parking on site and unrestricted parking in the roads

around St Christopher’s.

Taxicard

Most of our patients are entitled to a Taxicard as part

of the London Taxicard Scheme that offers subsidised

travel via the black taxi service. The scheme will give

you a greatly reduced fare for regular planned journeys

to St Christopher’s. Your St Christopher’s nurse can

provide you with more information about the scheme

that operates in your borough.

Minibus

If you are not able to get yourself to St Christopher’s

we have a minibus which can bring you into the centre

and it can accommodate a small number of

wheelchairs. However, the minibus is likely to be

collecting other patients as well and we therefore

cannot give you an exact ‘pick up’ time. We are

grateful for a small contribution of £1 towards each

journey taken on the minibus.

Financial help

St Christopher’s has a small fund to help people

experiencing difficulty with travel costs to

St Christopher’s. Please ask your St Christopher’s nurse

for further information.

St Christopher’s Hospice location map

St Christopher’s Home Care

A205 DULWICH COMMON LANE

SOUTH CIRCULAR ROAD

A205 LONDON ROAD

DARTMOUTH ROAD

FOREST

HILL

STATION

SYDENHAM HILL KIRKDALE

CRYSTAL PALACE PARADE

ANERLEY HILL A214

WESTWOOD HILL

BBC

TRANSMITTER

Crystal Palace

Park

CRYSTAL

PALACE

STATION

CRYSTAL PALACE PARK ROAD

THICKET ROAD

LAWRIE PARK ROAD

SYDENHAM ROAD

HIGH STREET

PENGE

WEST

STATION

SYDENHAM

STATION

PENGE

EAST

STATION

STATION ROAD

28

St Christopher’s at Home

Carers

This section is written for anyone who is providing

care or practical, emotional or social support for a

partner, relative, or friend with advanced illness living

at home.

There are nearly six million carers in the UK providing

care unpaid; the Government has been looking at

ways of helping carers do what can be a demanding

job. Many carers also have paid employment, look

after children or other dependent or frail family

members.

Many carers find that taking care of someone is an

important and fulfilling time in their lives where bonds

between people are strengthened. Nonetheless there

can be strains and worries, and the following

information aims to offer useful advice and sources

of support.

Carers have been asked what most concerns them.

The most common responses are:

• the danger of overwork and becoming physically

exhausted

• the risk of ill-health (back troubles, poor sleep,

depression)

• mental strain and anxiety

• stress on family relationships and friendships

• limitations on employment and career

• money worries and

• feelings of isolation, helplessness, sadness – and

sometimes regret, anger and guilt.

As a carer you will probably still be coming to terms

with the illness and the effects it is having on

everyone in the family. Each situation is different and

every person has their own way of coping. Illness

brings many changes to everyday life and relationships.

This can bring you closer to the person you are

helping, but it can also be worrying and tiring and you

may not know what help is available or who to call.

You may be involved in giving help yourself or

arranging for other people to provide help with a wide

variety of tasks such as:

• washing and dressing

• getting to bed and to the toilet

• housework, laundry or cooking

• spending more time with the person needing care

• responsibility for paperwork, bills and financial

matters

• attending medical or hospital appointments or

• monitoring care being given at home by professional

caregivers.

Most carers need help and support at some point so

that the best care can continue to be given.

What can help Who can help

Having good information about the illness of the

person you are caring for and about their treatment

Your St Christopher’s nurse, in consultation with the

hospice doctors, can provide information, as can the

specialist team at your local hospital and your GP.

At its best, caring is a partnership between patient,

carer(s), and the St Christopher’s Home Care team.

Good quality written information is available free from

Macmillan Cancer Support (for details see the

resources section starting on page 35) and from the

Anniversary Centre at St Christopher’s.

Knowing about local sources of practical help with

personal care and domestic tasks

Your St Christopher’s nurse or social worker can help

you contact the various agencies offering these

services. Some addresses and telephone numbers are

listed in the resources section starting on page 35.

St Christopher’s at Home

Looking after yourself physically

In concentrating on looking after others we can

sometimes start to neglect ourselves. Your health is

very important so try to eat well and ask for help if

you are having problems sleeping.

A physiotherapist can offer advice about the safest

way to help the person you are caring for move and

get about. Sometimes special aids and equipment

provided by community services can bring much

physical relief for you and the person you are looking

after. Your St Christopher’s nurse can advise you as

to whom to contact.

Looking after your own emotional health and

well-being

Knowing who is there to listen and give support

Taking a break from caring, whether for a few hours,

a weekend, or longer

Looking after someone is not always easy and often

frustrating. There are times when it will help to talk

to someone about how the cared for person’s illness

and treatment are affecting you and your life. Having

someone you can trust to share some of your

thoughts and feelings can lessen your worries and

feelings of anxiety. You may have a relative or good

friend whom you can trust or you might find it more

helpful to talk to someone outside the family circle.

This could be the St Christopher’s social worker.

The hospice also offers the services of a consultant

psychiatrist if you need to have more specialist advice.

It is important to continue doing things which give

you pleasure and help you to relax. Try to make

time for maintaining friendships and social contacts.

Having someone to give help and support when

communication between the person you are looking

after and with other members of the family,

including children, goes through a difficult patch

A serious illness can put strain on family relationships

and friendships. Some conversations can be difficult

for families.

The St Christopher’s social worker is able to spend

time with you, with the person you are caring for, and

with other family members to help with these.

Leaflets and activity booklets are available to help

parents or grandparents talk to any children in the

family about what it is like for someone close to them

to be ill, and about dying.

Carers Days at St Christopher's

St Christopher's runs regular Carers Days covering

topics such as understanding medicines, supporting

a person who cannot communicate easily, helpful

suggestions for people with poor appetites. If you are

interested in attending one of these free days, and

having a relaxation session run by one of our

complementary therapists, please ask your nurse.

30

St Christopher’s Home Care

Young carers

A young carer is a child or young person under the age

of 18 whose life is restricted because of the need to

take care of a sick or disabled relative. Young carers take

on practical and/or emotional caring responsibilities

that would normally be expected of an adult. There

are at least 175,000 young carers in the UK.

Some worries of young carers

• Can I catch the illness Will it happen to me

• What caused it Was it my fault Why us

• Can I do anything to make him/her better

• Will he/she get worse or even die

• Who then will look after me

• How do I cope with all these difficult feelings

• If I tell anyone such as my teacher will I go into

care

• What do we do for money

• What should I do in an emergency

All of these are normal and common and you may

have more.

What can help

Talk

Talk to some one such as your parents, another family

member, your favourite teacher, your friends. This can

feel risky but sometimes taking a risk can pay off. Think

about whom you can trust. You may want to write

down what you would like to say. The social worker

at St Christopher’s could also see you and he/she will

understand what you are feeling as they meet many

young carers. The St Christopher’s nurse will be able

to put you in touch. We run some group events for

young carers which give you an opportunity to meet

other young people in a similar situation. If you are

interested in these, please ask your St Christopher’s

nurse or social worker.

Young Carers Project

There is one in each Borough – see end of section.

Here you can meet other young carers. They offer fun

days and evenings out and some one to listen. They

can also offer information to the rest of your family,

for example financial advice.

The internet

There will be some useful websites at the end of this

section but remember it is important to be safe when

using chatrooms. Agree rules with your parents about

what you can and can’t do on the internet. This will

save arguments later. Don’t use your real name or give

personal information such as your address or phone

number.

Social Services

Carers who are 16 or over have the right to a Carer’s

Assessment and some boroughs will assess you if you

are younger. This is your opportunity to explain what

is happening at home and your worries and to see if

you can get more help. You will need to see a social

worker or care manager. The person you are caring

for may have one or you can ask the St Christopher’s

social worker or some one else can get the Social

Services telephone number from the telephone

directory.

School

If your teachers know you are looking after someone

at home they may be more understanding and try to

help. Some young carers find it easier if their parent

informs the school. It is important the school is aware

and it may have a school counsellor you can meet.

It may be that you are being bullied as sometimes

young carers can be seen as different. No one should

put up with bullies.

St Christopher’s Home Care

Looking after yourself

All carers need to re-charge their batteries! What helps

you feel less stressed It may be exercise such as

football, drawing (you could draw or paint a picture

to show how you feel), listening to music, talking with

friends or just being quiet and peaceful.

Acknowledgements

• Caring for Carers

• Help the Hospices

Useful contacts

Young Carers Bromley

Freephone 0800 015 7700

Email help@carersbromley.org.uk

www.carersbromley.org.uk

Supports young carers by contacting appropriate

services. Provides activities in school holidays, one-toone

confidential support from staff and opportunities

to meet other young carers, including support groups.

Croydon Young Carers

Courtyard House, 1d Church Road, Croydon CRO 1SG

Tel 020 8649 9339

Email youngcarers@carerscontactline.co.uk

Off The Record Young Carers Support Project is

for young people from 6-18 who look after or help to

look after a family member with an illness, disability

or a drug, alcohol or mental health problem. It offers

home visits, information, advice, advocacy, holiday

grants, a volunteer befriending scheme and help with

school issues. There are regular activities, outings

and holidays, a weekly youth club and a learning

support club.

Young Carers Project Lambeth Crossroads

Tel 020 8678 5605

Email youngcarers@souththamescrossroads.org

Carers who are under the age of 18 can get

information and advice on services, and have a chance

to talk to someone else about any problems.

Lewisham Young Carers

Tel 0800 019 8841

Email youngcarers@carerslewisham.org.uk

This service provides recreational respite, advocacy, a

befriending service and therapeutic support to young

people who have caring responsibilities for a

relative with a long-term illness or disability.

Southwark Young Carers

Tel 020 7703 6400

Email southwark.yc@actionforchildren.org.uk

This is a project for children and young people who

have a caring responsibility at home, due to the health

needs of someone they live with. A young person

between the ages of eight and 18 years can take part,

without charge, in the social activities that run

throughout the year.

www.youngcarers.net

The Carers Trust website – includes advice, a

chatroom and a discussion board.

www.youngcarer.com

The Children’s Society Young Carers Initiative gives

information for young carers.

www.riprap.org.uk

A website that can help when a parent has cancer.

www.carersuk.org

Provides information including advice about carer’s

assessment.

Childline

Freephone 0800 1111 - a listening service when in

trouble or danger

www.childline.org.uk

32

St Christopher’s Home Care

Financial help when you are a carer

Carer’s Allowance

You may be able to get Carer’s Allowance if you are:

• spending at least 35 hours a week caring for

someone getting either DLA for personal care at

the higher or middle rate or Attendance Allowance

at either rate

• over age 16

• not working or are working and earning less than a

prescribed amount and

• not a full time student.

It does not matter if you are living with the person

you care for but if the person you care for lives alone

check before you claim Carer’s Allowance because

they may lose entitlement to some of their benefit.

You can get Carer’s Allowance if you have a partner

who is working.

If you are already getting State Retirement Pension,

contribution-based Employment and Support

Allowance, Incapacity Benefit or Bereavement Benefit,

you will not get Carer’s Allowance. However, it may

still be worth claiming because you may qualify for

extra Income Support, Pension Credit, Housing Benefit

and Council Tax Benefit because you have an

underlying entitlement to Carer’s Allowance.

Income Support

If you are under pension age and single with savings

under £16,000 you may qualify for Income Support to

top up your income.

You may also get Income Support if you have a

partner but usually only if they are under pension age

and unable to work through sickness or disability or

if they are also a carer. Each couple’s circumstances

are different and you should always check to see if

you are entitled.

Getting Income Support will also entitle you to other

types of help, such as free prescriptions, free dental

treatment, optician’s services, help with mortgage

interest and help from the social fund.

Pension Credit

Male and female carers over women’s pension age

may be entitled to Pension Credit. The amount you

get depends on your income including other benefits

and the amount of savings you have but people who

get Carer’s Allowance or have an underlying

entitlement will get their income topped up to a

higher amount. Savings may reduce the amount you

get.

Getting Pension Credit may also entitle you to other

types of help, such as free dental treatment, optician’s

services, help with housing costs if you own your own

home, home improvement grants and help from

the social fund.

Contact the Pension Credit application line to make

a claim.

Child Tax Credit

If you have a dependent child or children you may be

able to get Child Tax Credit. Most families are claiming

this already but if the family income has dropped as

a result of your extra caring commitments you may

be entitled to more Child Tax Credit. Contact the Tax

Credit Helpline to make a claim or to inform them of

a change in circumstances.

If you get more than the basic amount you will

become entitled to free school meals and some

health benefits.

Housing Benefit

If you are finding it hard to pay your rent, apply for

Housing Benefit. Your housing officer or local council

offices will be able to send you the relevant

application form. Anyone on a low income can apply

St Christopher’s Home Care

for Housing Benefit as long as your capital/savings are

less than £16,000 or you are getting pension credit

(guarantee credit).

Council Tax

If you are on a low income you can apply for Council

Tax Benefit to help with Council Tax payments. This

can be up to 100% for those on very low incomes.

In certain circumstances there are also discounts

on Council Tax available to carers and disabled

people – check these out with the Hospice Welfare

Officers.

If you are living permanently in a hospital, a nursing

home, a residential home, a private hospital or

hostel, are receiving care or treatment there, and have

no other home, then you do not have to pay Council

Tax.

Health care benefits

If you get Pension Credit (guarantee credit), Income

Support or high levels of Child Tax Credit you will

become entitled to free prescriptions, free dental

treatment, free opticians services and fares to hospital.

You may also be entitled to some help with the above

if you do not get these benefits but you have a low

income. You need to make a separate claim on

form HC1 which is available from your local post office.

Taking a break from caring

You can have a break of up to four weeks every six

months and still get the Carer’s Allowance. This can

be extended to twelve weeks if you are in hospital

for at least eight weeks of that time.

If the person you care for is in hospital for more than

four weeks, their Attendance Allowance or Disability

Living Allowance is suspended for the rest of their

time in hospital. Your benefit may be affected too.

You should seek advice about what to do. This does

not apply if they are an inpatient at St Christopher’s.

Your benefit will be reduced if the person you care

for is in hospital for more than twelve weeks.

You will be able to claim the Carer’s Allowance and/or

the extra it allows on the other benefits for eight

weeks after the death of the person you care for.

Please note: all these benefits usually only apply if

you have no restrictions on your right to remain in the

UK. If you have an uncertain immigration status, please

ask for further advice.

You may find the following phone numbers useful:

Carer’s Allowance Unit

01253 856 123

Tax Credits Helpline

0345 300 3900

Disability Living Allowance Helpline

08457 123 456

Attendance Allowance Helpline

08457 123 456

Pension Credit Application Line

0800 99 1234

New claims (income support, employment and

support allowance, job seekers allowance)

0800 055 66 88

Carers UK Advice Line

0808 808 7777

34

St Christopher’s Home Care

Some resources for carers Bromley

National

Macmillan Cancer Support

89 Albert Embankment, London SE1 7UQ

Tel 020 7840 7840 Fax 020 7840 7841

Freephone 0808 808 0000 (Monday to Friday 9am-8pm)

Interpretation service available

www.macmillan.org.uk

On the website you can find over 6,000 pages of upto-date

cancer information, practical advice and

support for cancer patients, their families and carers.

Carers UK

20 Great Dover Street, London SE1 4LX

Tel 020 7378 4999 Fax 020 7378 9781

Email info@carers.org

www.carersuk.org

Carers Line 0808 808 7777 (Wednesday to Thursday

10am-12pm and 2pm-4pm)

Carers UK seeks to improve carers’ lives through

research, information provision and campaigning.

Carers Trust

Unit 14 Bourne Court, Southend Road,

Woodford Green, Essex IG8 8HD

Tel 0844 800 4361 Fax 0844 800 4362

Email support@carers.org

The Carers Trust is the result of a merger between

The Princess Royal Trust for Carers and Crossroads

Care. It provides advice and support for carers.

Cares Direct (NHS Choices)

Tel 0808 802 0202

www.nhs.uk/carersdirect/guide

Information about carer rights, assessments and

support.

Local

Carers Bromley

Caritas House, Tregony Road Orpington BR6 9XA

Tel 01689 898289 Fax 01689 890850

Freephone 0800 015 7700

London Borough of Bromley

Social Services & Housing

Civic Centre, Stockwell Close, Bromley BR1 3UH

Tel 020 8464 3333

Bromley PALS (Patient Advice and Liaison Service)

Tel 0800 389 5118

Email pals@bromleypct.nhs.uk

There are other smaller agencies providing specialist services for carers.

These can be accessed by contacting one of the above local

organisations and asking about what special help is available.

St Christopher’s Home Care

Some resources for carers Croydon

National

Macmillan Cancer Support

89 Albert Embankment, London SE1 7UQ

Tel 020 7840 7840 Fax 020 7840 7841

Freephone 0808 808 0000 (Monday to Friday 9am-8pm)

Interpretation service available

www.macmillan.org.uk

On the website you can find over 6,000 pages of upto-date

cancer information, practical advice and

support for cancer patients, their families and carers.

Carers UK

20 Great Dover Street, London SE1 4LX

Tel 020 7378 4999 Fax 020 7378 9781

Email info@carers.org

www.carersuk.org

Carers Line 0808 808 7777 (Wednesday to Thursday

10am-12pm and 2pm-4pm)

Carers UK seeks to improve carers’ lives through

research, information provision and campaigning.

Carers Trust

Unit 14 Bourne Court, Southend Road,

Woodford Green, Essex IG8 8HD

Tel 0844 800 4361 Fax 0844 800 4362

Email support@carers.org

The Carers Trust is the result of a merger between

The Princess Royal Trust for Carers and Crossroads

Care. It provides advice and support for carers.

Cares Direct (NHS Choices)

Tel 0808 802 0202

www.nhs.uk/carersdirect/guide

Information about carer rights, assessments and

support.

There are other smaller agencies providing specialist services for carers.

These can be accessed by contacting one of the above local

organisations and asking about what special help is available.

Local

Carers Contactline

Courtyard House, 1d Church Road, Croydon CRO 1SG

Tel 020 8649 9339

Young Carers Support Project

Courtyard House, 1d Church Road, Croydon CRO 1SG

Tel 020 8649 9339

Email jonathanandrew@carerscontactline.co.uk

Off The Record Young Carers Support Project is for

young people aged 6-18 who look after or help to

look after a family member with an illness. It offers

home visits, information, advice, advocacy, holiday

grants, a volunteer befriending scheme and help with

school issues. There are regular activities, outings and

holidays, a weekly youth club and a learning support

club.

Croydon Crossroads

410 Brighton Road, South Croydon, Surrey CR2 6AN

Tel 020 8688 4499

www.crossroads.org.uk

Croydon Primary Care Trust (PALS)

Leon House, 233 High Street, Croydon CR0 9XT

Tel 020 8274 6333

Email pals@croydonpct.nhs.uk

A service to guide you when you need advice, have

concerns or don’t know where to turn.

London Borough of Croydon Social Services

Carers Services Development Manager,

Taberner House, Park Lane, Croydon CR9 2BA

Tel 020 8686 4433

Croydon Carers Centre

12 Katherine Street, Croydon CR0 1NX

Tel 020 8680 8253

Email croydoncarers@hotmail.co.uk

www.croydoncarerscentre.co.uk

36

St Christopher’s Home Care

Some resources for carers Lambeth, Southwark and Lewisham

National

Macmillan Cancer Support

89 Albert Embankment, London SE1 7UQ

Tel 020 7840 7840 Fax 020 7840 7841

Freephone 0808 808 0000 (Monday to Friday 9am-8pm)

Interpretation service available

www.macmillan.org.uk

On the website you can find over 6,000 pages of upto-date

cancer information, practical advice and

support for cancer patients, their families and carers.

Carers UK

20 Great Dover Street, London SE1 4LX

Tel 020 7378 4999 Fax 020 7378 9781

Email info@carers.org

www.carersuk.org

Carers Line 0808 808 7777 (Wednesday to Thursday

10am-12pm and 2pm-4pm)

Carers UK seeks to improve carers’ lives through

research, information provision and campaigning.

Carers Trust

Unit 14 Bourne Court, Southend Road,

Woodford Green, Essex IG8 8HD

Tel 0844 800 4361 Fax 0844 800 4362

Email support@carers.org

The Carers Trust is the result of a merger between

The Princess Royal Trust for Carers and Crossroads

Care. It provides advice and support for carers.

Cares Direct (NHS Choices)

Tel 0808 802 0202 www.nhs.uk/carersdirect/guide

Information about carer rights, assessments and

support.

There are other smaller agencies providing specialist services for carers.

These can be accessed by contacting one of the above local

organisations and asking about what special help is available.

Local

South Thames Crossroads

Laburnum Court, Barstow Crescent,

Palace Road, London SW2 3NS

Tel 020 8671 6188 Fax 020 8671 5396

Email referrals@souththamescrossroads.org

Carers who are under the age of 18 can get information

and advice on services, and have a chance to talk to

someone else about any problems they have.

Southwark Carers

Cambridge House, 131 Camberwell Road, London SE5 0HF

Tel 020 7708 4497 Fax 020 7708 4877

Email infor@southwarkcarers.org.uk

www.southwarkcarers.org.uk

Provides relevant and accurate information about

all aspects of the caring role and aims to keep carers

up-to-date with the free services and events on offer

in the borough.

Carers Lewisham

Lewisham Carers Centre, Waldram Place,

Forest Hill, London SE23 2LB

Tel 020 8699 8686 Fax 020 8699 0634

Email info@carerslewisham.org.uk

www.carerslewisham.org.uk

Currently supports over 5,000 carers and provides a

wide range of services to anyone with caring

responsibilities in the Borough including young carers

(children under 18).

Lambeth PALS (Patient Advice and Liaison Service)

Tel 0800 587 8078 Email pals@lambethpct.nhs.uk

Lewisham PALS (Patient Advice and Liaison Service)

Tel 0800 587 7027 Email pals.lewisham@nhs.uk

Southwark PALS (Patient Advice and Liaison Service)

Tel 0800 58 77 170 Email pals@southwarkpct.nhs.uk

St Christopher’s Home Care

Eating and drinking

Basic information

Following a healthy, nutritious diet is something we

all try to do. However, this may change when people

are unwell due to:

• decreasing appetite

• changes in body needs

• the effect of any treatment (including oral

medications, radiotherapy, chemotherapy) or

• other symptoms.

This can be very difficult for people and their carers

as food plays such an important part in our lives

normally.

Notes for carers – how can you help

• Despite all of your efforts the food you prepare may

not be eaten. This is nothing personal – it is very

common with people who are ill.

• Try not to worry if the meals that you are used to

preparing are no longer desired. Smaller meals are

often more acceptable.

• There is a wide range of food supplements (available

on prescription via your GP). These provide extra

nutrition and can be used as a meal replacement or

taken between meals to increase intake. Ensure,

Enlive, Fortisip and Fortijuice are some of the ones

available.

Useful tips

• Encourage the patient to sit upright if possible

• ensure a relaxed environment

• alcohol can act as an appetite stimulant

• use a small plate

• offer small snacks or meals frequently and

• prepare what is wanted, when it is wanted if possible.

38

St Christopher’s Home Care

Washing and skincare

Maintaining good personal hygiene and keeping the

skin in good condition is important for several reasons

such as:

• a sense of well being and comfort

• prevention of infection and

• prevention of pressure sores.

Notes for carers

• Check the person’s skin every day – observe

pressure points carefully (spine, elbow, hips, heels,

ears)

• keep bed sheets dry and free of wrinkles

• use a mild soap

• pat skin dry, do not rub

• use a moisturiser

• encourage a change in position every two hours if

possible and

• if the person’s skin becomes red or sore, inform your

district nurse as soon as possible.

As someone gets weaker they will need more help.

Emotionally this may be very difficult for them as it

signifies a loss of independence. They may need

professional help or special equipment.

In order to make things easier some equipment may

need to be organised to help you, eg for bathing or

managing the toilet. The St Christopher’s nurse or

district nurse may make a referral for an occupational

therapist’s assessment. The occupational therapist will

be able to advise on managing activities of daily living

and will organise specialist equipment if needed. Ask

your St Christopher’s nurse for further information.

If someone needs more help than you can provide,

this can be arranged. A district nurse will make an

assessment as to the most appropriate arrangements.

At first, this care will usually be provided by Social

Service carers who, depending on need, can visit up

to seven days a week. As someone becomes more

ill more specialised help may be needed and the

district nurse may be able to help.

St Christopher’s Home Care

Mouthcare

Mouthcare is an important part of daily care as it:

• increases comfort

• prevents mouth sores and

• may improve appetite.

Notes for carers – how can you help

• Assist with regular denture or teeth cleaning (using

a soft toothbrush)

• encourage regular mouthwashes

• encourage fluids, ice cubes, gum or pineapple to

keep the mouth moist

• look out for white patchy areas on the mouth –

they may indicate oral thrush that requires special

treatment

• apply petroleum jelly to the lips and

• report any problems to the nurse or doctor.

Common problems

For dry mouth:

• encourage use of sugar-free gum

• encourage fluid intake, sucking ice cubes or

pineapple and

• apply petroleum jelly to the lips (unless the

person is on oxygen).

For oral thrush (white patchy areas in the mouth):

• clean teeth and dentures with toothbrush and

toothpaste and treat dentures with thrush

treatment.

If either dry mouth or thrush persist, discuss with your

nurse or GP.

40

St Christopher’s Home Care

Mobility

As people become less well, they may find it becomes

more difficult to move around. This may be due to

a number of factors such as weakness, fatigue, pain,

breathlessness or a combination of things that just

make it seem like too much effort.

While rest is important, it is also helpful to continue

to move around independently for as long as possible,

safely and comfortably.

Notes for carers

Safety in the home

Try to arrange the areas where your friend or relative

will be, so that pathways are as uncluttered as possible:

• make sure doorways are not blocked by things

jutting out

• make sure the floor is clear of hazards such as flexes

or cables and

• make sure the flooring is secured, eg no loose rugs

to trip over, no carpet edges or tiles lifting.

This will make it much easier to move about safely.

Useful tips

• Encourage your friend or relative to change their

position frequently and take short walks, even just

around the room.

• A simple walking aid, such as a stick or frame, may

help to maintain mobility and improve confidence.

It is much safer to use an aid than to clutch on to

furniture (or people). A physiotherapist can advise

on this (your St Christopher’s nurse can arrange an

appointment, if this will help).

• Make sure clothing is not hindering mobility or

safety. Clothing needs to be loose and comfortable,

but not too long or it may cause someone to trip

(this can be a problem with nightwear or dressing

gowns).

• Footwear needs to be comfortable but secure.

Avoid ‘sloppy’ footwear without backs. A slipper

that encloses the whole foot is much safer than a

mule-type. Make sure that the sole of the shoe or

slipper is not shiny or slippery.

• It is much easier to get up and down from a firm

base than a very soft one. Try to ensure that the

bed has a firm base and the mattress does not

sag, and that a firm and comfortable armchair is

available (not too low or soft).

Further advice can be obtained from the St Christopher’s

physiotherapist or occupational therapist, or from the

NHS community physiotherapy or occupational

therapist.

Helping someone to move

Do not try to physically help someone to do things

they can manage unaided. It is safer, both for you and

for them, to be as independent as possible. If a

manoeuvre seems very difficult, or you are in any

doubt, don’t attempt it – seek help.

• Make sure you or your friend or relative knows what

you are trying to do and how you will go about it.

• Using a good technique will often help with

manoeuvres and enable someone to retain their

independence for as long as possible.

For example:

To stand from sitting (see figure 1 overleaf)

Ask your friend or relative to:

1 Bring their bottom forward to the front of the chair,

bed or toilet.

2 Place their hands firmly on arms of chair. If there are

no arms, place their hands on the edge of the seat.

3 Tuck feet well back under them, a little way apart.

4 Lean forward from hips (nose over toes!).

5 Push through arms to stand. If help is needed, assist

by giving gentle forward pressure on back, between

St Christopher’s Home Care

Figure 1 Figure 2

Figure 3

shoulders. Say “Ready, steady, up!” so you work

together. Never try to lift someone from under the

armpit or by pulling their arms.

6 If a walking aid is used, they should now take hold

of it.

7 Make sure their knees are straight and they are well

balanced before they start to move or walk away.

This sequence can be reversed to sit from standing.

To help someone turn in bed from flat on their back

(see figure 2)

1 Remove tight or heavy bedclothes (you can keep

the person covered with a small light blanket).

2 If possible have only one pillow whilst moving.

3 Ask your friend or relative to bend up both their

knees and put feet flat on the bed (you can do this

gently, one at a time, if they are unable to do it

for themselves).

4 Stand at the side of the bed they are to face.

5 Bring their far arm towards you across their body.

6 Facing your friend or relative, place one hand behind

their shoulder and one behind their hip.

7 Ask them to roll towards you. You can give assistance.

8 Use pillows behind to support them, if necessary,

and ensure they are comfortable.

It is much easier to nurse someone in a hospital bed

than a domestic one. The district nurse can usually

provide these and instruct you in their use.

Our occupational therapist may also be of assistance

with advice on technique or equipment.

If someone falls (see figure 3)

Try not to panic. Don’t rush to get them up quickly –

you may injure them or yourself. Try to stay calm and

reassure them. Let them sit on the floor for a few

minutes to get their breath and see if they have

hurt themselves.

If they are unhurt and have no pain, and are able to

get up on their own, then let them do so. Putting a

firm chair next to them may help, or encourage them

to move across the floor on their bottom to a solid

armchair.

If they appear hurt or in pain, or are too frail to get

up without assistance, phone 999 and ask for the

ambulance service. They will come and take the

appropriate action. Keep your friend or relative as

warm and as comfortable as possible on the floor

while waiting.

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St Christopher’s Home Care

Anxiety

What is anxiety

Anxiety is a mixture of feelings. Such feelings include

fear, worry, being ‘on edge’ or being ‘panicky’.

Why does it happen

It is often not easy to find out why some people

get anxious but it commonly happens when people

are feeling very ill. One problem when we get ill is that

there is a lot of uncertainty and this may make people

feel especially anxious. Sometimes people try to

‘bottle it all up’ and this can make them feel worse.

What are the symptoms

There are a mixture of symptoms, including:

• tension, worry, fear or dread

• difficulty sleeping (especially getting off to sleep at

night)

• restlessness, agitation, irritability and

• shortness of breath, tingling fingers, feeling the heart

racing, frequent need to go to the toilet.

What can be done

There is much that can be done for people with

anxiety. If possible we like to avoid using drugs.

• Sometimes just talking to a friend, a relative or a

professional can help. We can help you decide

whether you want to talk about your fears or not.

• Distraction may help too. For example trying to keep

busy when you feel anxious.

• Complementary therapies such as aromatherapy or

hypnotherapy may help. These therapies are

available at the hospice – ask your nurse for details.

• Visits to the Day Unit provide support and a change

of scenery.

• Helping with pain and other symptoms often makes

a difference.

Cognitive behaviour therapy (CBT) can help you

identify self-defeating thoughts, feelings and actions.

It aims to build on strengths and develop new ways

of coping. If you think this might be helpful, speak to

your nurse who can refer you to our CBT clinic and

a qualified therapist.

• Sometimes anxiety comes on with depression, and

antidepressants may help.

• St Christopher’s nurses, social workers, spiritual care

team and psychiatrists are all able to offer support.

Your St Christopher’s nurse will discuss this with you

as appropriate.

• Exercises to help you control your breathing and

your anxiety can be taught by our physiotherapists.

St Christopher’s Home Care

Depression

What is depression

Everyone has bad days when they feel low and people

with a serious illness can expect to feel sad

sometimes. However, in some people these normal

experiences may become more severe and persistent.

It is important to recognise this when it happens as

something can often be done.

Why does it happen

Just having a serious illness obviously makes depression

more likely. For people with serious illnesses there are

many things which make it more likely to happen, such

as:

• physical symptoms – especially pain

• being depressed in the past

• family difficulties or worries about other members

of the family

• loneliness and isolation or

• some drugs and other treatments as their side

effects may be hard to put up with.

How can I recognise depression

There are a number of warning signs. None of these

on their own is sufficient to diagnose depression but,

put together, a common pattern would be:

• feeling low or sad for several days in a row

• being unable to enjoy things which used to bring

pleasure

• feelings of wanting to ‘give up’

• loss of appetite

• poor sleep

• poor concentration

• feeling tired all the time and

• being snappy or irritable.

One of the difficulties about diagnosing depression

is that many patients with serious physical illnesses

lose their appetite or sleep badly anyway and this is

not necessarily a sign of depression.

What can a carer do

• The most important thing is to recognise the

problem and to try and talk about it. Sometimes

just acknowledging that there is a problem and

talking about it helps.

• Talk to a member of the team at St Christopher’s.

There are things we can do. We see it all the time

and there is nothing to be ashamed of.

• Encourage the patient to talk to a member of

staff at St Christopher’s.

• Remember depression is not a sign of weakness and

the sufferer cannot just ‘snap out of it’.

• Many sufferers think that just because they cannot

do everything they used to manage (the shopping,

gardening, looking after the children or

grandchildren etc.) they are ‘useless’. Not surprisingly,

this makes them feel more depressed and these

views are inaccurate. They may not be able to do

everything they used to but no one is ‘useless’.

What can we do

We try to provide practical support, listening and

sometimes drug treatments.

• Our team members are used to talking about

depression and sometimes just talking about feelings

makes a big difference. The nurses and social worker

may be able to offer enough help.

• We can provide practical support to manage

difficulties which cause depression such as housing

difficulties or problems with benefits.

• Our social work team is very experienced in helping

people with depression.

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St Christopher’s Home Care

• Visits to the Day Unit and Anniversary Centre

provide support and a change of scenery.

• Helping with pain and other symptoms often makes

a difference.

• If severe, antidepressants can make a big difference.

They are not addictive and are very safe. We can

ask your GP to organise a prescription.

• We may suggest that you meet one of our

psychiatrists as they have the expertise that is

sometimes required.

St Christopher’s Home Care

Pain

What is pain

This is difficult to define. Everybody experiences pain

differently so pain is what the person experiencing it

says it is.

What causes it

• Physical causes – these may or may not be related

to the illness – and

• emotional, spiritual or social causes – these nonphysical

aspects may cause physical pain to increase.

For example, people who are anxious or depressed

may experience greater pain than people who are

not.

What can you do

• Ensure that painkillers are taken regularly (see

following pages). It is better to keep the pain at bay,

so encourage the taking of regular painkillers, even

if there is no pain when they are due.

• Ensure that ‘when needed’ painkillers are taken for

breakthrough pain.

• Monitor the pain in terms of:

• Patterns of pain – Where is the pain How far does

it extend what makes it worse what makes it

better

• Types of pain – Is it an aching, stabbing, burning

or shooting pain

• Effect of painkillers – Do they help How much

How long for

• How many extra painkillers are being taken Do

they help

• Keep a diary of what does and does not help so that

your nurse can look at it with you and work out a

pain plan.

• Use other methods such as gentle massage, heat

pads, encourage relaxation. These things can help.

What to do if your pain plan is not working

Contact your St Christopher’s nurse:

• when there is a new pain or a worsening of an old

pain

• when sleep is disturbed by pain

• when the painkillers do not seem to be working very

well or for very long or

• when the painkillers are causing troubling sideeffects,

eg sickness, constipation, drowsiness or

confusion.

We sometimes find it helpful to refer people on for

massage, aromatherapy, physiotherapy or an

appointment with one of our doctors;

We will review your pain plan regularly and discuss

it with the multi-professional team.

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St Christopher’s at Home

Medicine safety

Many hospice patients have a lot of medicines to take.

Some of these will be prescribed for you to take

regularly, others just when they are required and some

may be given to you just in case they are needed in

the future.

Where should I store my medicines

All medicines must be stored in a practical way so that

you can take them when you need them but they

should be kept out of the reach of children. Most

medicines can be stored at room temperature but

make sure that they are not kept too close to a

heat source, such as next to a radiator or in direct

sunlight.

If a medicine needs to be kept in the fridge, this will

be printed on the package. It is ok for most of

those medicines to be out of the fridge for a while –

for example if you need to take them out for a day.

If in doubt, please check with the pharmacist who

provided them.

What about medicines I am no longer using

Please do not put any unused medicines into your

domestic rubbish. Liquids should not be poured down

the sink or flushed away in the toilet as they can

contaminate the water supply. Please take them back

to your local pharmacy.

St Christopher’s at Home

Morphine

What is morphine

Morphine is a strong painkilling drug. It works very

well on many types of pain, although it is most

commonly associated with cancer pain. It is also

sometimes used to control feelings of breathlessness.

How do I take morphine

Morphine can be given in several ways. It’s available as

a simple tablet or liquid which work for about four

hours but as well as these, there are slow-release

tablets or capsules that last for 12 or even 24 hours,

so that you might only have to take one or two a day.

For people with swallowing difficulties, slow-release

morphine is also available in granules.

I thought morphine was an injection

Morphine is available as an injection too if needed

although most patients take morphine in tablet form.

If I take morphine, will I get addicted to it

Taking morphine for pain will not make you an addict.

It is quite normal for the dose to increase over time,

although many people remain on a stable dose for

long periods. As with other medicines, you should not

stop taking morphine suddenly without discussing

this with your doctor or nurse, as your body needs

time to adjust.

What happens when I start taking morphine

We always start with the lowest possible dose to

allow your body to get used to it. Your pain should

improve very quickly, although it may take a little while

to find the right dose and so it may have to be

increased if it is not enough to stop the pain.

What are the main side effects to look out for

Morphine tends to make you constipated and most

people who take it need laxatives. Morphine can also

make you feel sick when you first take it. Your doctor

may give you something to stop this feeling, but it

usually only lasts a few days.

Morphine can make you feel sleepy for the first few

days while you are getting used to it or when the dose

is increased but our bodies can usually adapt gradually.

However, if you are already taking pain killers they can

often be equal in effect to a low dose of morphine,

so changing to morphine should not feel especially

different.

What about my day-to-day activities if I am taking

morphine

You should find you can carry on doing the things you

want to, when you are taking morphine. In fact many

of our patients find they can do more because their

pain is better controlled.

Driving may be possible but there are many factors

to consider and your doctor or nurse will advise you.

Please remember that as in any other situation you

should only drive if you feel it is completely safe for

you to do so.

Will I have to take morphine forever

All your medication, including morphine, will be

reviewed regularly with your doctor or nurse. You may

find that later on you have less pain than you have

now or we may try a different treatment for your pain.

If that happens, your doctor or nurse can gradually

reduce or even stop the morphine. However if the

cause of the pain is still there most people find they

need to carry on taking it.

Is there a maximum dose

No – morphine is unusual in that there is no maximum

dose. If it is taken for pain as prescribed, the dose can

be increased gradually to match your pain.

Often, people can be on very big doses of morphine

for a long time, with no significant problems.

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St Christopher’s Home Care

If I take morphine for pain, why do I need other

painkillers

Although morphine works well on many types of pain,

some sorts of pain need different painkillers. You may

need to take several different types of medicines to

manage your pain.

Morphine belongs to a group of painkillers called

opioids. Morphine is the most commonly used opioid,

but there are also several others, for example codeine,

oxycodone or fentanyl. These can be as effective as

morphine but occasionally one may suit a particular

pain or patient more than another.

We can also give painkillers in a number of different

ways. For example, some can be supplied as a patch

that sticks to the skin or as a dissolvable tablet or spray

to use in the mouth.

What about morphine for breathlessness

If there is no obvious treatable cause of breathlessness

there are several ways in which breathing can be made

easier, such as a low dose of morphine. There are also

other medicines which may help.

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