Psp-matters-Autumn-2012-web

Issue number 55 

PSP Matters 

www.pspassociation.org.uk 

Autumn 2012 

Continuing Care • Olympic Torch • Support Group Lifeline

Contents 

4. News Update 

Launch of the PSPA’s new website at the 

end of September 

5. News Update 

Family and Friends Day in Cheshire plus 

PSPA receive a Commendation for their 

Carer’s Information Pack 

6. Care Pathway 

PSPA have introduced a number of new 

practices aimed at further enabling access 

to services to meet standards of care for 

people affected by PSP 

10. Continuing Care 

A family tells of their experience of how 

PSP means life changes for the individual, 

their families and friends 

12. Personal Experiences 

Telling it as it is…musings and snippets on 

life with PSP or CBD 

14. Personal Experiences 

Comedy combined with reality helps raise 

awareness of PSP 

16. Fundraising 

PSPA Supporters tell of their experiences in 

carrying the torch for PSP 

18. Your Events 

An update on events our supporters have 

organised or taken part in from going 

beyond the call of duty to throwing the 

cake away! 

22. Upcoming Events 

Read about the exciting fundraising events 

you could take part in 

24. Research 

Huw Morris gives a progress report on the 

formation of an important new research 

organisation 

25. Support Groups 

A list of support groups taking place across 

the country 

02 PSP Matters Autumn 2012 

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5 

14 

16 

10 

18 

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PSP Matters 

Executive Editor: 

Fergus Logan 

Design and Print: 

BSP and Newnorth Print Ltd, Bedford 

Cover Picture: 

Hannah Daykin with her father, David, 

and the Olympic Torch – see page 13 

for her story. 

The PSP Association 

PSP House, 167 Watling Street West, 

Towcester, Northamptonshire, 

NN12 6BX 

T: 01327 322410 

F: 01327 322412 

www.pspassociation.org.uk 

E: psp@pspassociation.org.uk 

The views expressed in PSP Matters, which 

is published three times a year, are not 

necessarily those of the PSP Association and 

therefore products and services advertised 

or promoted should not be taken as 

recommendations by the Association, who 

cannot be held responsible should any 

complaint arise. 

PSP Matters is available as a pdf and can be 

downloaded from the website 

Online Forum & HealthUnlocked 

The PSP Association’s online forum, 

PSP_HealthUnlocked (www.psp. 

healthunlocked.com/) provides a safe place 

for people affected by PSP or CBD to share 

experiences and support each other with 

the challenges of living with these diseases. 

The PSP Association is dedicated to the support of 

people with Progressive Supranuclear Palsy (PSP) and 

the related disease Cortico Basal Degeneration (CBD), 

and those who care for them. As PSP and CBD are very 

similar, we often use ‘PSP’ as a shorthand for both. 

The PSP Association Registered Charity Numbers: 

England and Wales 1037087 / Scotland SC041199 

Follow us on Twitter @pspassociation 

Chief Executive 

What a busy time it has been – for 

the entire nation! The Queen’s 

Silver Jubilee, the Olympic and 

Paralympic Games and it has 

been no different for the PSP 

Association. 

We now have the Helpline up and 

running, our volunteer programmes 

are burgeoning (with new Support 

Groups forming all over the country) 

and our Specialist Care Advisers 

making great progress in ensuring we get in touch 

with everybody who is affected by PSP. News of these 

developments and pen-portraits of our new staff members 

can be found throughout this issue. 

Our local activists have been busy too, with a range of 

fundraising initiatives involving eating, slimming, golfing, 

running, singing, swimming, torch bearing and any number 

of other lively and inventive activities. ‘Hats off’ to all those 

who help raise thousands and thousands of pounds for PSPA 

by the strength of their commitment and (often) the sweat 

of their brow. 

You can keep up-to-date with the latest information about 

current and future events by visiting our new website at 

www.pspassociation.org.uk or by finding us on facebook or 

twitter. 

As always, we love to hear from you – why not get in touch? 

Fergus Logan Chief Executive 

Working for a World Free of PSP 

PSP Matters Autumn 2012 03

News update 

New look website 

As part of our programme of 

improving services to members, a 

new website will be launched at 

the end of September. 

“We need to provide information for our 

members, those living with PSP and CBD, 

their carers, friends and family as well 

as a resource for medical professionals,” 

said our Director of Development. “The 

site will include the latest fundraising 

Don’t forget your flu jab 

For many of us, a bout of flu can be 

unpleasant, but not serious. However, 

people living with PSP are at greater risk 

of developing serious complications of flu 

such as bronchitis and pneumonia. 

We encourage you to contact your GP 

to seek advice about having the flu jab, 

as some anti-virals can result in the flu jab 

being ineffective. 

If you are the main carer of someone 

living with PSP, whose welfare may be at 

risk if you become ill, ask your GP about 

getting vaccinated too. 

Your GP surgery should have supplies 

of the vaccination in October. 


initiatives, updates on research projects 

and news from around the support 

groups. The popular forum and 

discussion boards will be updated and 

will have a fresh new look. As always, we 

will be keen to hear what people think 

- thoughts and comments will be very 

welcome.” 

Watch out for the new site - www. 

pspassociation.org.uk. 

SOS? SMS 

For deaf, hard-of-hearing and 

speech-impaired people there’s an 

additional emergency contact – 

Emergency SMS. 

This service allows registered 

users to send an SMS text 

message to the UK 999 service 

where it is then passed to the 

police, ambulance, fire rescue, or 

coastguard who can then reply to 

you. 

You will need to register your 

mobile phone before using the 

emergency SMS service. 

To register for Emergency SMS 

using text messages: 

- Send the word ‘register’ in an 

SMS message to 999 

- You will then receive SMS 

messages about the service 

- When you have read these SMS 

messages, reply by sending ‘yes’ 

in an SMS message to 999 

- You will receive an SMS message 

telling you that your mobile 

phone is registered or if there is a 

problem with your registration. 

Or for more information, click on to 

http://www.emergencysms.org.uk/ 

index.php

Family and Friends Day 

The first of our new regional events 

for people with PSP or CBD, 

family carers and friends takes 

place on Saturday November 17 th from 

9.30am – 3.30pm at Chimney House 

Hotel, Sandbach, Cheshire 

CW11 4ST. It will provide 

an opportunity for a ‘get 

together’ in an informal 

and relaxed setting and 

to meet others in similar 

circumstances. 

Specialist speakers will 

be coming along to offer advice on 

a range of practical issues, including 

planning a holiday, arranging a respite 

break and equipment needs, in addition 

to a demonstration of hand massage, 

Prism Glasses 

“ Specialist 

speakers will 

be coming 

along to offer 

advice...” 


the latest news from the PSPA – and even 

a cookery demonstration with ‘Sven the 

Chef’! 

Tickets are £5 (to include refreshments 

and lunch) but pre-booking is essential. 

For more information, 

email debbie.benadie@ 

pspassociation.org.uk, 

or call Debbie on 01327 

322410 or log onto the 

PSPA website - www. 

pspassociation.org.uk 

Accommodation can 

also be booked directly with the hotel 

(£65 per double room, per night quoting 

reference BK23501) on www.chimneyhouse-hotel-cheshire.com/ 

or call 01270 

769900. 

Seeing Clearly 

These specialist spectacles help to 

compensate for gaze problems and, 

when used for short periods, can help 

reading and eating, as well as watching 

television and enable the wearer to 

see their family and friends better. To 

place an order, please contact Debbie 

Benadie on 01327 322410. If you have a pair of prism glasses you 

PLEASE NOTE: Prism glasses are not suitable for 

people who wear prescription glasses, nor are 

they suitable for use when walking. 

no longer use, please would you kindly 

return them to the PSPA, as they can be 

reconditioned and used again. 

Commendation 

for PSPA 

The PSP Association’s Carer’s 

Information Pack 

has been highly 

commended by 

the British Medical 

Association 

(BMA). The pack 

is designed to 

help manage 

PSP or CBD, particularly if 

Raffle 

Winners 

Carer’s 

Information 

Pack 

Your personal guide to PSP 

Working for a world free of PSP 

you are caring for someone with 

either condition. Copies can be 

downloaded from our website 

or by contacting the helpline 

and information service – call 

0300 0110 122 (calls are charged 

at local rate) or email: helpline@ 

pspassociation.org.uk. 

PSPA Director of Programmes, 

Debra Chand, and copywriter, 

Alison Marlow, accepted the award 

on behalf of the Association. 

Thanks to everyone who took part 

in the Summer Prize Draw raising 

over £14,000 for PSPA. 

1st Prize: 

E. Burden from Sterlingshire 

2nd Prize: 

K Scale from West Midlands 

3rd Prize: 

P. Roberts from Merseyside 


Care Pathway 

Latest Developments in 

PSP Services 

Following last year’s survey of experiences of people with PSP, the 

Association has revamped the way it works and introduced a number 

of new practices (from 1st June 2012) aimed at further enabling access 

to services that meet standards of care for people affected by PSP. 

Here is a progress report… 

Helpline and Information Service 

Launched on 1st June, the helpline has already responded to several hundred 

telephone calls and emails. It is now the main first point of contact for advice and 

support for people with PSP and CBD, their families, carers, volunteers and health 

and social care professionals. 


Introducing new staff members… 

PROFILE 

Name Sharon Schillerstrom 

Position Helpline and Information 

Services Manager 

Responsibilities 

Managing and developing the service 

to offer confidential advice, information, 

practical and emotional support to 

people affected by PSP & CBD. 

Experience includes 

Over eight years working for a UK charity, 

supporting people living with another 

neurological condition, with 3 years in 

a similar role managing the national 

helpline and information service. 

Sharon says 

“I am really passionate about supporting 

family carers as all too often their needs 

go unnoticed. I experienced this myself 

as a young carer to a parent living with a 

terminal illness. I now care for someone 

close to me, combining work and care, so 

understand some of the challenges that 

caring brings. 

“A service like this can be a life-line for some 

families and individuals. People may have 

a question or need advice on such things 

as accessing services or their rights to an 

assessment or may be thinking of planning 

a holiday and want practical advice. It’s that 

type of information we can help with. 

“Sometimes people just need a listening ear. 

We know how reassuring that can be and I 

would encourage people to get in touch.” 

Next step? 

“Over the next few months, we will be 

developing our information bank and aim 

to have the most extensive and up-to-date 

repository of information in the UK on all 

aspects of living with PSP. 

“I am keen to recruit and train volunteers 

for the helpline and information service, 

to enable us to further strengthen our 

support for people affected by PSP. I will 

also be developing our range of printed 

information. It is really important that 

people affected by PSP are involved in 

shaping our information, as you are the 

experts. (I’d love to hear from you – please 

get in touch!)” 

Hobbies 

Outside work, Sharon enjoys walking, 

gardening, listening to music and 

cooking for family and friends. Her 

passion for championing the needs of 

carers led her to become a volunteer 

for Northamptonshire Carers, where she 

spent over four years as a Trustee. Sharon 

hasn’t hung up her volunteering hat just 

yet - she has been a volunteer for a small 

local community group for over 25 years. 

Contact: 

Call 0300 0110 122 or email 

helpline@pspassociation.org.uk

Specialist Care Advisers 


Helpline:0300 0110 122 / helpline@pspassociation.org.uk 

The team of Specialist Care Advisers work to ensure that people affected by PSP or CBD 

have access to good local support - advising on the services available and acting as 

advocates with health and social care professionals to make sure services are available 

when needed. This was an area highlighted as a priority in the PSP survey last year. The 

team now welcomes two new members… 

PROFILE 

Name Jan Brittain 

Position Specialist Care Adviser 

Area 

South East England & London 

Experience 

Qualified nurse and midwife; further 

education lecturer; worked with 

people with learning difficulties and 

for charities including Macmillan 

Cancer Support, British Red Cross and 

Alzheimer’s Society. 

Jill says: 

“I was born and bred in North London, and 

qualified at the North Middlesex Hospital, 

where I stayed for 7 years before having 

my family. I returned to employment after 

my youngest child went to school but 

have always wanted to work with people 

with neurological conditions. Many years 

ago, a very good friend’s brother had an 

acquired brain injury and my best friend’s 

PROFILE 

Name Michaela Morris 


Area 

North East England & Scotland 


7 years as Specialist Occupational 

Therapist in hospices and community 

Michaela says: 

“I am delighted to be joining the PSPA at 

such an exciting time of development and 

growth. Through my work, I am very aware 

of how difficult it can be to find services 

and support when needed. I am looking 

forward to building links with individuals 

Dad had Multiple Sclerosis. I believe 

that the skills I have gained throughout 

my very varied career will be an asset to 

people with PSP/CBD. I am passionate 

about my new role and really look forward 

to working with health and social care 

colleagues to enrich and improve the 

quality of lives for all people affected by 

PSP.” 

Hobbies 

Jan is an outdoor girl, loves walking and 

hill climbing, exploring the countryside 

and visiting National Trust and English 

Heritage properties, photography, 

reading, and cinema but her real 

passion is music – most kinds but 

especially jazz. 

Contact 

Call 01473 233285 or email jan.brittain@ 


and their families, friends and carers, as 

well as health professionals and voluntary 

agencies to raise standards of care and 

access to services. I have been really ‘struck’ 

by the great work that is being done here 

and is planned for the future – daunting 

and exciting at the same time!” 

Hobbies 

Outside work Michaela enjoys walking, 

creative activities, baking, singing and 

spending time with friends and family. 

Contact 

Call 01423 858548 or email michaela. 

morris@pspassociation.org.uk 


Care Pathway 

Specialist Care Advisers 


PROFILE 

Name Jill Lyons 


Area 

South West England and South Wales 


6 years as Nurse Specialist 

Jill says:“I have worked at the Association 

for almost 6 years as a Nurse Specialist, 

and my background is as a registered 

nurse. I have practised in hospitals, as a 

GP Practice Nurse, in stroke rehabilitation 

and am trained as a ‘Care of the Elderly 

Specialist’. 

“I am excited about the new role of 

Specialist Care Adviser and prepared for 

the challenges ahead. I will be focussing 

PROFILE 

Name Kat Haines 


Area 

North West England, North Wales and 

Northern Ireland 


Extensive experience of progressive 

neurological conditions 

Kat says: 

“I have worked as a Nurse Specialist at the 

PSPA since March 2010 and am now really 

looking forward to helping our members 

gain the best possible support from within 

the statutory social and health services. 

“I have extensive experience of progressive 

neurological conditions having worked for 

many years on a specialist neurological 

unit in a major hospital in Lancashire. 

Prior to that, I worked in the community, 

on enabling access to support and 

identifying gaps in the provision of health 

and social care - I think this new role will 

allow us to be more proactive. 

“Having worked with PSP for six years, I am 

well known in this area and will remain 

a point of contact for information and 

advice for the region.” 

Contact 

Direct Line: 01934 842366 

jill.lyons@pspassociation.org.uk 

with adults with challenging behaviour 

and was engaged in research, up to PhD 

level, investigating the implications of 

health beliefs on depression and symptom 

management in people with Parkinson’s 

Disease, and their carers. 

“In my new role I hope to help carers 

and people with complex needs feel 

empowered, by providing them with the 

necessary signposting and information. “ 

Contact 

Direct Line 01995 601533 

kat.haines@pspassociation.org.uk

! 

Volunteering Services 



We aim to establish the highest standards and increase the numbers of volunteers involved in our 

work, enabling us to make a real difference to people living with PSP, their families and carers by 

reducing the sense of isolation and providing timely support and information in a variety of ways. 

Introducing new staff member… 

PROFILE 

Name Wendy Crofts 

Position Volunteering Services 

Manager 

Experience 

20+ years working with volunteers in 

national charities: Victim Support, the 

MND Association and the MS Society 

Wendy says: 

“I am really excited about working with the 

PSP Association as I know the difference a 

strong volunteering service can make to 

people living with and affected by PSP. 

“I have gained vast amounts of experience 

in all aspects of volunteering practice from 

recruiting and supporting volunteers, 

designing and delivering training and 

the development and implementation of 

good practice guides and programmes. 

PSP & CBD Helpline and 

information service 

0300 0110 122 

(Monday to Friday, 9am until 5pm) 

Messages can be left outside these hours. 

Email: 

helpline@pspassociation.org.uk. 

We aim to respond to all enquiries within 

24 hours. 

I am looking forward to getting to know 

existing volunteers and working with 

members of staff to build on the strong 

foundations already in place.” 

Hobbies 

Spending time with her new grandson 

and two sons. Wendy is a wannabe 

gardener and likes long walks but 

avoids hills! She enjoys entertaining and 

cooking and has taken up sewing again 

– just finishing a quilt she started 10 

years ago! 

Contact 

Call 01327 356134 or email at 

volunteering@pspassociation.org.uk. 

“My father has advanced PSP and I 

am doing everything I can to make 

his life more than an existence. This 

is not easy. 

“I cannot stress enough, how 

much better I felt having called 

the PSP helpline for the first time. 

To be listened to by someone who 

understood was like a weight 

being lifted off my shoulders. To 

know that I can call back and that 

help has been offered, as well as 

understanding and being listened 

to, means so much. Thank you.” Daisy 


Continuing Care 

Life Changes 

The diagnosis of PSP means life changes for the 

individuals, their families and friends. PSP Matters 

talks to Nicky Christall-Grier about her family’s 

experiences… 

Karate World Champion, Bill 

Christall was dedicated to his 

family and to karate – a sport he 

adored and in which 

“ I’ve learnt that 

he excelled. In 2003, at 

the age of 69, he began 

to experience a variety 

of symptoms and in 

May 2007 he received a 

diagnosis of PSP. 

“Mum, Marilyn, and 

Dad returned home 

and life continued as it 

had before,” tells Nicky. 

“But as Dad’s condition deteriorated, 


there is support 

out there but 

you have to 

know the right 

questions to 

ask...” 

Mum battled on, caring for him virtually 

single-handedly - visits from family 

relieved some of the pressure. Dad was 

not sleeping, so that made 

it even more difficult for 

Mum to rest. They did not 

receive any help from the 

services.” 

Nicky explained that 

various respite care 

options had not worked 

out and Bill was admitted 

to a care home whilst 

Marilyn and the family 

decided on a course of action. 

“We sought 

advice from Age 

UK who suggested 

that Mum and 

Dad might be 

eligible for NHS 

Continuing Care. I 

began to research 

it and realised it 

was what we needed. I spoke to Dad’s 

consultant and GP to secure their 

support, along with that of the home 

where Dad was staying. 

“Mum was also assessed by case 

workers and we completed lots of 

forms. The main thing we had to prove 

was that the disease was unpredictable 

and variable.” 

Bill and Marilyn were finally approved 

for Continuing Care and in October 

2010 Bill moved permanently into a 

home paid for by the NHS. 

“I’ve learnt that there is support out 

there but you have to know the right 

questions to ask,” adds Nicky. “Social 

services won’t necessarily tell you what’s 

available but if you know what to ask 

for, you can be assessed and may be 

eligible – you need to ask questions 

from the outset.”



What is NHS Continuing Healthcare? 

This is free care provided over an 

extended period of time (outside 

of hospital) that is arranged and 

funded by the NHS. It is only available 

for people who need ongoing 

healthcare and meet specific eligibility 

criteria. This service is sometimes 

called ‘fully funded NHS care’. 

NHS continuing healthcare can be 

provided in any setting, including 

a care home, hospice or the home 

of the person being cared for. If the 

individual is living in a care home, 

NHS continuing healthcare will cover 

care home fees, including the cost of 

accommodation, personal costs and 

healthcare. 

If the service provided is in the home 

of the person, it will cover personal 

care and healthcare costs - it may also 

include support for the carer. 

To be eligible for NHS continuing 

healthcare, the person being cared for 

must be assessed as having a ‘primary 

health need’ with a complex medical 

condition and substantial and ongoing 

care needs. Not everyone with a 

disability or long-term condition will 

be eligible. 

“ If the service 

provided is in 

the home of the 

person, it will 

cover personal care 

and healthcare 

costs - it may also 

include support for 

the carer.” 

Advice for applying for NHS continuing healthcare 

• Planning ahead isn’t always easy, 

but thinking about continuing care 

funding as early as possible can be 

helpful. Even if a person is not yet 

eligible for continuing care, it is worth 

using this checklist to prepare for 

assessments in the future. 

• Compile a medical history of the 

person being cared for and update 

it on a regular basis. This information 

may be useful later i.e. if the application 

is refused and you appeal against the 

decision. 

• Keep a brief log of all communication 

with health and social care providers 

about the needs of the person you 

care for. Things to include in the log – 

brief details, date, time, name of those 

you spoke to. 

• Do your own assessment of the 

person you are caring for. The 

Department of Health’s national 

framework document is quite 

lengthy, but pages 18 – 22 provide 

useful information. 

http://www.dh.gov.uk/en/ 

Publicationsandstatistics/ 

Publications/ 

PublicationsPolicyAndGuidance/ 

DH_103162 or see PSPA contact details 

below 

• Whether applying for or appealing 

against an earlier decision, always 

put things in writing and keep all 

correspondence. 

• Ask your GP to support your 

application. Request medical records 

from various bodies involved in the care 

of the person e.g. the hospital or the GP. 

• Try to attend all assessments or 

appeal/ review hearings. 

• Be persistent. 

Remember, PSPA is here for you. 

For advice call the helpline - 

0300 0110 122 or email helpline@ 


For more information click on to; 

www.dh.gov.uk/en/ 

Publicationsandstatistics/Publications/ 

PublicationsPolicyAndGuidance/ 

DH_103162 

www.nhs.uk/chq/pages/what-iscontinuing-care.aspx 

www.ageuk.org.uk 


Personal Experiences 

Telling it as it is… 

Musings and snippets on life with 

PSP or CBD 

Travels with my 

Husband 

Careful planning is crucial in ensuring a smoothrunning 

holiday, advises Mary Allen. Here she tells 

PSP Matters about a recent adventure and gives a 

few top tips for trouble-free travel… 


“ I’d like to go back to Malaysia and 

Singapore,” declared my husband, 

Peter, one morning earlier this 

year. This came as no surprise to us 

because he was born and spent his 

early childhood in Malaysia and several 

times during his working life had been 

based in Singapore. Also, as a family, 

we had several very enjoyable holidays 

with many happy memories in both 

countries. 

But what had changed since those 

bygone visits was that Peter was now 

living with PSP. 

So, I set about making arrangements. 

To get a good deal on flights, I used a 

travel agency. ‘Trailfinders’ came up with 

a package, where we’d spend a couple 

of days in Kuala Lumpur before flying 

on to Penang, then on to the Cameron 

highlands (a beautiful, cool and relaxing 

part of Malaysia) before heading to 

Singapore. I discussed, with the travel 

advisor, Peter’s mobility – she would 

inform the airlines and assured us that 

he’d be well looked after. I booked the 

hotels, requesting rooms with disabled 

facilities. 

Next concern - travel insurance. We 

already had an annual policy and the 

insurers knew of Peter’s diagnosis but 

because we were travelling further 

afield, thought it wise to check. We 

paid an additional £68 on our normal 

premium - I was expecting it to be 

more! Knowing we were ‘covered’ 

gave me considerable peace of mind, 

especially if we had to cancel at the last 

minute. 

Before we left, Peter saw his GP and 

ensured he had plenty of medication 

to cover the holiday (and for a couple 

of weeks extra, just in case there was

any kind of delay). I also packed a 

comprehensive first aid kit, along with 

a copy of Peter’s normal prescription 

(as some countries require proof that 

the drugs being carried are indeed 

prescribed medicines). 

So, with great trepidation, on 22 nd 

June this year, we started out on our 

17-day holiday, accompanied by our 

daughter, Sarah, who was to 

share the care with me. “ On arrival at the airport, I 

let the airline know we had 

arrived and from thereon 

Peter was very well cared 

for, being the first on to 

the airplane, but you are 

last off at the other end! In flight, Peter 

had extra attention from the cabin 

crew and upon landing, the ground 

staff looked after us. The assistance of 

all these people gave us one of the 

most peaceful flights we had ever 

experienced! (The upside of travelling 

with a person requiring assistance - 

you don’t have to keep checking that 

you have the right departure gate, the 

ground personnel do it all for you!) KLM, 

AirFrance and Malaysian airlines were 

excellent and I would not hesitate to fly 

with them again. 

Once at our 


Once at our destination, we had a 

wonderful time, relaxing in the warmth 

and sunshine. I had a break when Peter 

went to stay with his brother and his 

wife (a nurse) in Penang - it was the first 

time in months I had been able to sleep 

without waking to every noise in the 

night. 

Unfortunately, Peter did have a nasty 

fall whilst we were 

away and was admitted 

to hospital for two 

days. I handed the 

PSP Green Fact Card 

(the one that explains 

PSP) to the doctors, so 

that they understood 

Peter’s condition. The care he received 

was excellent, although he was 

pleased to rejoin us for the rest of the 

holiday. Thanks to the hotel staff (and 

the medical team at the hospital) the 

experience was far less traumatic than 

it might have been. Our insurers were 

very helpful and apart from the initial 

outlay (now reclaimed) they dealt with 

the hospital for other costs. 

So, would we do this type of holiday 

again? Yes! if we could be assured of the 

same help and assistance we received 

throughout our journey this time. 

destination, 

we had a 

wonderful 

time...” 

Mary’s top tips on a 

successful holiday 

• Good planning 

• Ensuring we booked facilities for 

people with disabilities 

• Checking the detail of travel 

Insurance 

• Booking hotels where the cost of 

late cancellation isn’t the full cost 

of the stay 

• Carrying a comprehensive first 

aid kit 

• Carrying the green fact cards 

about PSP 

• Having a credit card with 

sufficient funds on it for 

emergency use 

• Having a good ‘second pair of 

hands’ who can competently 

do the running around when 

necessary 

• The most important thing, a good 

sense of humour… 

PS. Peter has asked to do the holiday 

again, so that we can get to the 

Cameron highlands - the part he 

missed out on! 


Personal Experiences 

Comedy combined with reality helps 

raise awareness of PSP 

Comedian, activist, reporter and 

writer Mark Thomas is probably 

the last person you would 

expect to be spending his time raising 

awareness about PSP. 

The 49-year-old standup comedian 

is famed for his political and human 

rights campaigns, many of which have 

provided rich material for his radio, TV 

and stage shows for years. 

Now the father-of-two from south 

London is doing more to bring PSP into 

the public eye than possibly anyone 

else has to date. 

His method? His latest award-winning 

show Bravo Figaro. His reason? His father 

Colin has PSP. 

Mark has spent years fighting and 

campaigning on a range of issues he 

saw as unjust and unfair, and thrusting 

those issues into the public spotlight in 

a bid to get things changed. 

By comparison, his latest show is not 

about human rights, or unfair laws, or 

massive corporations exploiting the 

public. It is instead about his father’s 

love of opera, Mark’s own relationship 


with him and his father’s fight against 

PSP, a disease he has lived with for ten 

years. 

Mark, who opened Bravo Figaro at the 

Edinburgh Fringe Festival in August, 

has already won two awards for it: The 

Scotsman’s Fringe First Award, which 

recognises outstanding new theatre 

work; and the Herald Angel Award. 

“All the stuff I do and have ever done 

in the past has 

“ always been about 

saying something 

that isn’t normally 

said, or looking 

at something 

that isn’t normally 

looked at,” said 

Mark. 

“I guess Bravo Figaro is a continuation 

of that because PSP is not known 

about. I love the fact that talking about 

the show in newspapers, on radio and 

TV has meant awareness has been 

raised of PSP. It chimes with my belief 

that everyone has to do their bit and 

everyone has to shout.” 

There’s an 

interesting thing 

where as you get 

older you get a bit 

more forgiving...” 

The show, while perhaps predictably 

has been heralded as both hilarious and 

highly emotional at the same time, has 

generated one response that Mark had 

not foreseen. 

“One of the interesting things that has 

happened is the number of people who 

have contacted me because of the show, 

who have or have had relatives with PSP,” 

said Mark. 

“Because of the nature of PSP and the 

fact that there’s no known cause, there’s 

no treatment, it is often misdiagnosed 

and it’s not as commonly known as other 

degenerative diseases, it creates a feeling 

of medical isolation in people. 

“So when I have spoken to people who 

have experience of the disease there’s an 

instant bond. And that’s not just because 

you have had similar experiences but also 

because you are no longer marginalised.” 

Colin was a self-employed builder 

with an unexpected love of opera. Bravo 

Figaro tells the story of Mark’s childhood, 

growing up with a dad who he didn’t 

understand and didn’t always get along 

with. 

Colin was diagnosed with PSP ten years 

ago and since then Mark admits their 

relationship has altered and he sees his 

dad differently. 

“There’s an interesting 

thing where as you get 

older you get a bit more 

forgiving,” said Mark. “On 

a very personal level on 

how we see relationships, 

it’s not the finishing line 

but the distance travelled 

that counts.” 

“And as a parent myself I now realise 

just how easy it is to make mistakes!” 

Bravo Figaro is running at the Traverse 

Theatre Edinburgh until August 26th, and 

then begins a tour of the UK, including 

London in September. Details can be 

found by visiting www.markthomasinfo. 

co.uk.

PSP Support Group 

Provides Lifeline 

When Shirley Hurstwaite discovered her local 

PSP Support Group her world changed forever. 

Shirley and her husband Derek, 

who has CBD, had been left 

feeling isolated and alone with 

no support to help with Derek’s 

increasingly worsening condition. 

But from her first meeting of the 

newly revamped Northamptonshire PSP 

Support Group, Shirley 

felt a weight had lifted 

off her shoulders. 

“It was just amazing 

to meet other 

people in the same 

circumstances as us 

and to meet people 

“ It was just amazing 

who could help us and get us support,” 

said Shirley. 

“Straight away we were put in 

touch with healthcare professionals 

and charities who have really made a 

difference to our lives.” 

Since that first meeting, Shirley now 

receives eight hours of respite care for 

Derek every month, which enables her 

to visit her mother and do other things 

she wasn’t previously able to because 

she couldn’t leave Derek. 


The couple have also been visited by 

a physiotherapist and have the support 

of a Parkinson’s Disease Nurse and an 

Information Support Worker. Derek has 

also just received a four-wheel walker to 

help him move about more easily. 

“I can’t thank the PSP Association 

enough,” said Shirley. 

“Before going to the 

meeting, Derek and 

I had felt we had 

been left locked up 

in a cupboard and 

forgotten about. 

Now we are getting 

the help and support we need and 

we’ve made friends with other people 

in similar circumstances. It’s fantastic.” 

The PSP Association runs 34 Support 

Groups across the country and is 

currently developing a further 11 

groups. The aim of the Support Groups 

is to provide a warm and welcoming 

environment in which people affected 

by PSP and CBD can meet and chat with 

other people in similar circumstances, 

and gain access to services and 

to meet other 

people in the same 

circumstances as 

us...” 

support from health and social care 

professionals and charities including the 

PSP Association. 

Support Groups are open for anyone 

to attend, be it people living with PSP 

and CBD, family members and friends, 

or health and social care professionals. 

We also welcome anyone who would 

like to volunteer to help out at a PSP 

Support Group in your local area. For 

more information about your local 

group please email psp@pspassociation. 

org.uk 

Turn2us 

Turn2us (part of Elizabeth Finn Care) is 

a registered charity which helps people 

access financial support via different 

funding streams i.e. welfare benefits 

and grants. 

Most of us have heard of SSAFA, 

but there are over 200 benevolent 

funds in the UK and hundreds of 

other accessible funding streams for 

individuals. Some are more widely 

known than others. 

Some funds are accessed more than 

others, for example The Retail Trust. This 

means the amount of financial support 

available may be lower than from lesser 

known funds. However, representatives 

of some lesser known funds may only 

meet once every couple of months, 

therefore having an application for 

funding approved may take several 

weeks. 

Do visit the website http://www. 

turn2us.org.uk/ or contact the 

confidential free helpline for further 

advice. Opening hours are 8am until 

8pm Monday to Friday. Telephone: 

0808 802 2000. 


Fundraising 

Carrying the Torch for PSP 

As the sporting success of the Olympics will live long in the 

memory, so too will the recollections of those lucky enough 

to help take the Torch on its epic journey around our Isles. 

Playing their part were the four PSPA ‘Olympians’ who were 

selected for their own ‘moment to shine’ as they ran with 

the flame. Here are their stories… 

Hannah Daykin carried the Olympic 

Torch in Sheffield where she is a full-time 

student. Her Dad has PSP. 

“It was an amazing experience,” said 

Hannah, who is studying criminology at 

Sheffield University. “It was my moment 

of glory and I wanted to dedicate it to 

my dad. It was just wonderful that he 

made it to Sheffield to see me.” 

Also carrying the torch in his 

hometown of Sheffield was Seb Coe, Vice 

President of PSPA and Chairman of The 

London 2012 Organising Committee. 

‘’I knew Seb had been told I was 

taking part on that day as well and I 

got the chance to meet him which was 

amazing!” 


Along the route Hannah was able to 

take the Olympic torch over to her Dad 

(see front cover), who had made the 

journey from Nottingham with Hannah’s 

mum and brother. 

Beccy Reading-Jones has run 10 

London Marathons for PSPA, raising 

over £9,000 and carried the flame in 

Wolverhampton. Beccy was nominated 

for her selfless contribution to support 

for charity and her role as a Scout leader, 

despite her own disability, dystonia. 

“I chose the PSP Association to run 

for years ago, as I wanted to support a 

smaller, less well-known charity. Next 

year will be my 11 th London Marathon for 

the Association and I have managed to 

persuade my nephew to run too. He will 

be quicker than me as he is younger, but 

if I can say that we have competed in the 

same race and have our picture taken 

together, I will be a happy Aunt!” 

“The torch relay was for all those I 

have helped over the years. It was an 

unforgettable day – I’m so proud and 

honoured to have been involved.”

Steve Watson lives in Lancashire and 

carried the torch in Bolton. Steve’s 

mother, Joyce, has PSP. 

He was nominated by 

Academy Juniors FC, a girls 

only football club that Steve 

started 4 years ago – it now 

has 150 girls aged 4-18 

playing every week. The girls 

help him in raising funds and 

awareness of PSP. 

“ ‘Enjoy your 

moment to 

shine’, and I 

completely 

did...” 


“The weeks running up to the day 

were increasingly exciting, and the day 

was a massive high! When 

handing the torch to me, 

the organiser said, ‘Enjoy 

your moment to shine’, 

and I completely did! 

It was a truly amazing 

experience. 

“Throughout the run 

I was thinking about how huge the 

Olympics is, and what a privilege it 

was to carry a flame that brings hope, 

happiness and inspiration to so many 

people. 

“Since then I’ve taken the torch into 28 

schools and 15 residential care homes. 

This has been really popular and many 

places have made donations to PSP as a 

result!” 

If you would like to support ‘A 

Million to Beat PSP’ it’s not too 

late to make an Olympian effort. 

For further information contact: 

events@pspassociation.org.uk or 

contact Helen Porter on 

01327 356131 

2012 

An organiser’s tale 

In the aftermath of the Olympics, we 

are delighted that Seb Coe (PSPA Vice 

President) is hosting a very special 

event at The Dorchester, London, 

where he will be speaking openly 

about his ‘Journey to 2012’ guided by 

the questioning of chat show host, 

Michael Parkinson. 

Supporting Seb on the night will 

be some of the UK’s leading sporting 

personalities and Olympians and a 

host of VIP guests. 

This is the pinnacle of the PSP 

Association’s ‘A Million to Beat PSP’ 

campaign, which has been endorsed 

by Lord Coe since its launch earlier in 

the year. 


Your events 

Summer Reception 

Over 50 guests attended a 

summer evening reception 

hosted by PSPA Patron for 

Yorkshire, Lord Halifax and his wife, at 

their home, Garrowby Hall, near York. 

Lord and Lady Halifax and guest on the terrace of Garrowby Hall. 

Sisters step out 

The Fife Coastal Walk took place 

again this year for PSPA and is 

growing in numbers as more 

families turn out to support PSPA. 

Sisters Siobhan, Erin and Posy Clyne 

and were amongst those who took part 

in the 13 mile trek in memory of their 

Grandpa who passed away in April. 

Siobhan tells their story: 

“My Grandpa first became ill with PSP 

in 2004 but it wasn’t until 2010 that he 

was diagnosed. Even though he was 

ill, I have so many precious memories 

with him that I will hold on to forever. 

In March this year, Grandpa was taken 

into hospital. I went to visit him several 

times and I felt comforted just by being 

with him. 

After my Grandpa passed away in 

April, I manage to keep strong by 

reassuring myself that he is no longer in 

any pain or discomfort. I remember him 

as he was before, not how he was in the 


Wine and canapés were served on 

the terrace, which enjoys stunning 

views across the Garrowby Estate, whilst 

a harpist provided a perfect musical 

accompaniment. Guests were also 

York Carers’ Week 

York Carers Week Michael Shepherd with Lord & 

Lady Mayor, Keith & Karen Hyman, Guildhall, York 

The Clyne family on the coastal walk. Inset: Siobhan Clyne with her Grandpa, John. 

final stages of the illness. 

We took part in the Fife coastal walk 

with my parents in the hope that the 

funds we raised would go towards 

helping support people like my 

Grandpa and their families.” 

Starting at Earlsferry and continuing 

along the coast to Crail, the walk takes 

in 13 miles of beautiful scenery and 

invited to look around the beautiful 

private rooms of the house. 

Special thanks to Lord and Lady 

Halifax for their generous hospitality 

in helping to raise over £1,200. The 

Local Support Group did a great job 

in organising the event, supported by 

fundraiser Michael Shepherd and his 

volunteers. 

picturesque villages. 

Organiser, Elizabeth Birrell, also took 

part in the walk for the second year 

running. Elizabeth and husband, Ian, 

who is living with PSP, have helped 

coordinate the event in conjunction 

with their local Anstruther Rotary Club, 

and a fantastic £8,000 has been raised 

for PSP from the walks.

Beyond the call of duty 

Home Help, Lorna, went beyond 

the call of duty for the McNevin 

family when she took on 

the challenge of the Women’s Mini 

Marathon in Dublin this summer. Paula 

McNevin tells their story: 

“My Mam, Bernadette, was diagnosed 

in December 2009, My 

Dad, William, and I look 

after her. Lorna, our 

home help has been 

with us for three years, 

and is brilliant. As well as 

her home help duties, 

she has become one 

of the family and is a 

vital part of our support 

system. She and my 

Mam are great friends, 

Coventry Golf Day 

On Thursday, 6 th September, 36 golfers took part in the PSPA’s 

15th annual Coventry Golf Challenge. A big thank you goes 

once again to Clews & Co for their continued support with 

this event. 

With freshly cut grass and the sun shining down this 

turned out to be a fun filled day for all. The winners of the 

tournament were ‘McIntosh Law’ (pictured) reaching a score 

of 93 points from the Stableford challenge. 

We would like to thank all those that took part in helping us 

make the Coventry Golf Challenge another success. 


and often ‘gang-up’ on Dad when he 

won’t sit down! Lorna and her daughter 

Joanne ran the Flora Women’s Mini 

marathon on 4th June for the PSPA, and 

all together we have raised over €1,000 

- as well as distributing approx 100 PSP 

information cards!” 

Canine Swimathon 

Marianne Aughton and Ruth Tomlinson 

organised an 18-hour Sponsored Canine 

Swimathon where each dog swam for 

20 minutes. They had 54 dogs splashing 

and having fun in the pool and have 

raised a lot of money for PSP. 

Proud of helping with 

PSP Tribute Funds 

A lasting way to honour 

someone special 

www.muchloved.com | Registered Charity No. 1118590 | info@muchloved.com 


Your events 

Fred’s Challenge 

Since Fred Smart’s wife Isabel was 

diagnosed with PSP in 2009, Fred 

has been on a mission to raise the 

profile of the condition in his town of 

Fraserburgh, Aberdeenshire. 

With lots of fundraising activities 

being held around the town, Fred 

has raised over £3,500 and he says his 

next challenge will be to create a PSP 

support group in Fraserburgh for the 

local community. 

“If we can get the support, we’ll do 

it,” says Fred. “Not a lot of people know 

about PSP. The people at Aberdeen 

Hospital, when Isabel was diagnosed, 

couldn’t tell us if there was a group we 

could contact. People are coming out of 

hospital feeling lost.” 

Isabel began showing 

signs of PSP in 2007, 

but was not diagnosed 

with the disease until 

two years later. Fred 

says he would like to continue caring 

Howl! 

Brother and Sister Team, Haroun and Amina Appiah challenged themselves to take 

on the Wolf Run for PSP, a 10K race through woods, swimming across streams and 

wading through bogs in aid of PSP. 

Along with a group of friends, the team has raised almost £2,500 for PSPA in 

memory of their mother, Patricia. 


“ Fred has 

raised over 

£3,500...” 

for his wife at home. “Isabel can’t walk, 

her speech is going, and her sight is 

sometimes affected by it, but 

we’ve had a lot of help locally, 

and the social services have 

been spot on. We get a speech 

therapist who comes pretty 

regularly to help, and we get the 

physiotherapist up from the hospital.” 

Fred continued, “I want to make 

people aware of this disease and to 

let people know that there is support 

available in Fraserburgh.” 

If you are interested in helping Fred 

set up a support group in Fraserburgh 

then contact us at volunteering@ 

pspassociation.org.uk or call us on 

01327 322410. 

Edinburgh Marathon 

Well done to the PSPA runners in 

the Edinburgh Marathon who raised 

over £6,500. One runner, Paul Hedley, 

(pictured) raised over £800.

Walking in Wales 

Family and friends of Dave and Linda 

Hurley (who is living with PSP) donned 

their walking boots and trekked 10 

miles from Brynmawr to Abergavenny 

British 10k London Run 

Seven supporters put on their running 

shoes for PSPA and helped raise over 

£3,500 at the British 10k London Run. We 

thank them for all their hard work and 

dedication 

Sherry does Curry 

Sherry Najran hosted a curry night in 

June and raised £347. This sum will be 

matched by her employer, Halifax bank. 

Sherry’s dad is living with PSP and her 

Mum is his carer. 


along the old railway pathway to raise 

funds for PSPA. Dave and Linda joined 

the team towards the end of the 

walk to enjoy the good weather and 

camaraderie. 

Another friend, Lucy, organised a 

sponsored climb to the top of Peny-Fan, 

(highest peak in the Brecon 

Beacons) and 9-year old entrepreneur, 

Harry, created a sponsored slot car 

racing game at his school fete. In all, 

over £600 was raised and the Hurley 

family would like to thank everyone 

who contributed. 

Serial jumper 

Brian Trigg has just 

launched himself 

out of an aeroplane 

for the 66 th time! 

Brian, (74) a 

parachute regiment 

veteran, is planning another 4 parachute 

jumps to bring his total to 70, in 75 years. 

Most recently, he has been accompanied 

by his relatives, Nancy and Darren Jones, 

who also organised a cabaret night – 

together raising over £2,250. Brian’s wife, 

Carol, is living with PSP. 

Throw away the cake! 

Congratulations to Larry Mabey who 

has lost 3 stone on a sponsored slim. 

“At the beginning of January, I started 

my weight loss programme, with 

the intention that by 1st June (my 

birthday) I would be 13 stone – a loss of 

approximately 3 stone. I have not been 

this weight since I was 38 years old; I’m 

60 now (gasps of disbelief!) 

“My father died of PSP, and this was 

a very difficult challenge for me – I 

love my food and drink, but I decided I 

would achieve it through a programme 

of sensible diet and exercise. As an 

incentive to myself, I put in £10 a week 

until I hit the 13 stone target, with my 

estimate that I was saving this amount 

on my food bill. 

“At 11am, on June 1st 2012, after 

a marathon workout at the gym I 

weighed in at my goal weight of 13 

stone. It has been very hard but well 

worth it, not only have I raised over 

£600 but I feel so much fitter now that I 

am slimmer. 

“Thanks to everyone who has 

sponsored me - I would have given 

up half way through without your 

support and the thought of the 

money I was raising for PSPA. All I have 

to do now is keep the weight off!” 

We would love to hear from you. Please write to us and tell us what is 

happening in your area. Send your letters to the Editor at PSP House, 

167 Watling Street West, Towcester, Northants NN12 6BX or email to 

psp@pspassociation.org.uk 


Upcoming Events 

Santa Run 

Join thousands of jolly Santas in our 

festive 5K fun run on 9 th December 

around Greenwich Park. Gather a 

group of friends together to enjoy this 

short course – a distance achievable 

for all abilities (you 

needn’t run – walking 

“ and jogging is also 

allowed!) 

How to Enter: 

Bring some glee 

to PSP by taking 

part in the family 

Santa Run. We have 

guaranteed places for which there is a 

Gather a group 


of friends 

together to 

enjoy this short 

course...” 

£25 registration fee and a sponsorship 

pledge of £100 towards a world free of 

PSP. 

If you would like to join the 

Greenwich Park race, contact the Events 

Team on events@pspassociation.org.uk 

or 01327 356132. 

Once registered you will 

receive a free Santa Suit 

and fundraising materials 

to help you reach your 

target, including sponsor 

forms, Santa’s training 

plan, balloons and posters. 

Be a part of the jolliest race in the UK! 

Fresh Faces on the 

Fundraising Team 

Introducing new staff members... 

PROFILE 

Name: Dean Joy 

Position: Community and Events 

Fundraiser 

Experience includes: 

Events Coordinator for Keech 

Hospice Care based in Bedfordshire 

Dean says: 

“I am delighted to be joining PSPA at a 

time where there are so many changes 

being made. I will be looking after the 

events such as running and challenges, 

as well as maintaining our links with 

corporate sponsors. I am pleased to be 

working for a national charity that has 

high ambitions, matching my own. I 

hope that I can help PSPA achieve these 

goals and continue to raise awareness 

for the charity and its work.” 

Hobbies 

Dean is a footie fan, being a season 

ticket holder at Luton Town Football 

Club where he cheers on his team 

alongside his Dad - that’s when he’s 

not being dragged around shopping 

centres by his fiancée! 

Contact 

01327 356132 or email, dean.joy@ 

pspassociation.org.uk

New Zealand Golf Day Carol Concert 

The New Zealand Golf 

Club is a top-class course 

located within the famous 

Surrey Heath belt. Not long 

by today’s standards at a 

little over 6,000 yards, but 

with a lowly par of 68 it 

represents a challenge. There 

will be prizes for the 1st, 

2nd and 3rd placed teams, 

and a nearest the pin prize 

on a selected hole in the 

afternoon round. 

For more information and 

to book your place on the 

New Zealand Golf Day please 

contact the fundraising team 

at events@pspassociation. 

org.uk or 01327 322419. 


PSPA 

We still have places! 

Help us find a cure for PSP by joining our running team 

at the Virgin London Marathon. 

For more information call: 

01327 356132 

Email: 

marathon@pspassociation.org.uk 

Visit: www.pspassociation.org.uk 

Progressive Supranuclear Palsy 

Registered charity numbers: 

England & Wales 1037087 / 

Scotland SC041199 

The PSP Association’s Carol Concert is on 13 th December 

at St Clements, East Cheap, London. This is always a festive 

evening with carols led by the talented Helios Choir, which 

is followed by a Mulled Wine and Mince Pie Reception at 

the Regis Offices, close to St Clements. 

Please book early to avoid 

disappointment. Tickets are £18 

and can be reserved at psp@ 

pspassociation.org.uk or call 

01327 322410. Alternatively, for a 

booking form and full details, click 

onto www.pspassociation.org.uk 

For more information and to sign up 

for any of these events, please contact 

the fundraising team on 01327 356131 

or email events@pspassociation.org.uk 

Christmas Cards & 

Special Gifts 

Christmas 2012 Cards and Gifts now available from the 

PSPA shop at www.pspassociation.org.uk or watch out for 

the special PSPA Christmas Card Brochure arriving in the 

post soon. 

Please help us continue our vital work - order PSPA 

cards and gifts in 2012. 


Photo courtesy of MND Association 

Research 

Huw Morris 

Huw Morris of the ‘UK-PSP Research Network’ gives 

PSP Matters a progress report on the formation of 

this important new research organisation. 

The last 15 years have seen an 

explosion in our knowledge of 

PSP. Let me recap... 

We now know that nerve cell damage 

in PSP is associated with the abnormal 

deposition of a brain protein called 

‘tau’ - common to other closely related 

conditions and some forms of frontotemporal 

dementia/Pick’s disease and 

CBD. 

We have learned about the biology 

and pathology of tau and know that 

“ ...a UK wide 

tau’s normal function 

appears to be to stabilise 

microtubules, which 

enable transport and 

communication within 

nerve cells. In PSP, tau 

protein forms into 

abnormal protein clumps 

(‘aggregates’), which may 

directly cause nerve cell 

damage and/or disrupt microtubules. 

Based on this work, a number of 

possible disease treatments have 

been suggested, including drugs that 

modify tau chemistry (such as sodium 

valproate, lithium and tideglusib) and 

others that stabilize microtubules (such 


as Davunetide). 

In parallel, new 

techniques are 

emerging which will 

allow the measurement 

of abnormal tau in the 

cerebrospinal fluid 

(CSF) and on brain 

scans. A recent, large 

collaborative genetic 

study has described a 

number of new genetic 

risk factors (which do 

not obviously relate to tau). Some of 

these genetic risk factors seem to relate 

to the way in which nerve cells respond 

to the accumulation of abnormal 

proteins and this is likely to be a key 

factor in age related neurodegenerative 

diseases. 

Although PSP is not a ‘familial’ 

disease, we know that there are a 

number of genetic risk factors, which 

slightly increase the risk of developing 

PSP, probably in conjunction with 

collaborative 

network to 

enable us to fully 

understand the 

biology of the 

disease.” 

other genetic or 

environmental 

factors. Much of 

this research has 

been supported and 

encouraged by the 

PSP Association - our 

challenge now is to 

translate these preclinical 

discoveries 

in PSP and tau into 

effective treatments for patients. 

So we are in the process of setting 

up a UK wide collaborative network 

to enable us to fully understand 

the biology of the disease; also to 

have a way of tracking the effects of 

treatments in patients and to show 

that these treatments can be safe and 

effective. The network will include 

Newcastle, Manchester, Oxford, 

Cambridge, London, Brighton and 

Cardiff. A standard system will be used 

to gather clinical data from patients 

who are happy to participate and a 

variety of biological samples from 

blood and, ideally, cerebro-spinal 

fluid (‘biomarkers’) to enable the 

development of new disease tracking 

tests. We will use the Network to 

develop new studies that will involve 

clinical assessment, genetics, biomarker 

and brain imaging work. 

This information, along with results 

from post-mortem studies, will be 

gathered together to create a ‘wider 

picture’. Importantly, we will try and 

increase the local referral of patients 

to research clinics, as we know that 

there are likely to be a large number of 

patients with PSP in the UK who have 

been misdiagnosed, have not been 

in contact with a PSP nurse or seen a 

specialist with an interest in PSP. The 

NHS now supports research officers 

within a network for neurodegenerative 

disease (DeNDRoN) and we would hope 

that they would be able to support a 

PSP network. 

We are also envisaging collaboration 

with the pharmaceutical industry and/ 

or the development of new UK-based 

studies on treatments for PSP. With 

time, we hope that the network will 

expand to include new centers. The 

PSP Association is supportive of the 

development of this network and we 

hope that this is something that can be 

up and running before the end of the 

year. 

UK-PSP Research Network 

David Burn, Alex Gerhard, John Hardy, 

Janice Holton, Henry Houlden, Andrew 

Lees, Nigel Leigh, Michelle Hu, Huw 

Morris, Tamas Revesz, James Rowe, Romi 

Saha, Kevin Talbot, Nick Wood.

Support Groups 

Support Group Meetings 

Please note: Support Group dates are planned 

well in advance and are subject to change. 

Please check our website or call the PSPA on 

01327 322410. 

Group Held Date & Time 

Lancaster St Johns Hospice, Lancaster Fri 28 Sept 2012, 13.00 

Brentwood The Marillac, Brentwood, Essex Sat 29 Sept 2012, 14.30 

Northampton Grangefield Residential Care Home, Earls Barton Sat 29 Sept 2012, 14.30 

Cardiff Ty George Hospice Care, Whitchurch Tue 2 Oct 2012, 11.00 

Leicester Age Concern, Earls Shilton Tue 2 Oct 2012, 11.00 

Cambridge Trumpington Village Hall, High St, Trumpington Sat 6 Oct 2012, 14.30 

Aberdeen The Stuart Resource Centre, Aberdeen Mon 8 Oct 2012, 14.00 

Bedhampton Social Hall, Bedhampton Mon 8 Oct 2012, 10.30 

Coventry Ansty Social Club, Grove Road, Ansty Mon 8 Oct 2012, 13.00 

Morpeth Stannington Village Hall, Stannington Tue 9 Oct 2012, 10.30 

Shrewsbury The Hamar Centre, Mytton Oak Road Thu 11 Oct 2012, 11.00 

Pocklington Burnby Hall Room, Pocklington Sat 13 Oct 2012, 10.00 

Dorchester Joseph Weld House, Dorchester Hospice Tue 16 Oct 2012, 11.00 

Camberley 79 The Avenue, Camberley, Surrey Thu 18 Oct 2012, 10.30 

Wimbledon Drake House, Wimbledon, London Sat 20 Oct 2012, 14.45 

Brentwood The Marillac, Brentwood, Essex Sat 27 Oct 2012, 14.30 

Northampton Grangefield Residential Care Home, Earls Barton Sat 27 Oct 2012, 10.30 

Norwich Stoke Mill Restaurant, Stoke Holy Cross Sat 3 Nov 2012, 11.00 

Carlisle Day Hospice, Eden Valley Hospice, Durdar Rd Mon 5 Nov 2012, 13.30 

Glasgow The Beardmore Hotel, Clydebank Mon 5 Nov 2012, 13.30 

Warrington Fairfield & Hawley Neighbourhood Project, Warrington Thu 8 Nov 2012, 14.00 

Pocklington Burnby Hall Room, Pocklington Sat 10 Nov 2012, 10.00 

Cheltenham Leckhampton Court Hospice, Cheltenham Tue 13 Nov 2012, 11.00 

Cranage Cranage Village Hall, Cranage, Cheshire Tue 13 Nov 2012, 13.30 

Liverpool The Neurosupport Centre, Norton Street Fri 14 Nov 2012, 11.00 

Wimbledon Drake House, Wimbledon, London Sat 24 Nov 2012, 14.45 

Northampton Grangefield Residential Care Home, Earls Barton Sat 24 Nov 2012, 14.30 

Bristol Sue Woolnough’s Home, Henbury Tue 27 Nov 2012, 13.30 

Cambridge Trumpington Village Hall, High St, Trumpington Sat 1 Dec 2012, 14.30 

London The National Hospital for Neurology, Queen’s Square Mon 3 Dec 2012, 11.00 

Pocklington Burnby Hall Room, Pocklington Sat 8 Dec 2012, 10.00 

Lancaster St Johns Hospice, Lancaster Fri 14 Dec 2012, 13.00 

Wimbledon Drake House, Wimbledon, London Sat 15 Dec 2012, 14.45 

Pocklington Burnby Hall Room, Pocklington Sat 12 Jan 2013, 10.00 

Northampton Grangefield Residential Care Home, Earls Barton Sat 26 Jan 2013, 14.30 

Brentwood The Marillac, Brentwood, Essex Sat 27 Jan 2013, 14.30 

Wantage Mary Simmonds Home, Wantage Tue 29 Jan 2013, 11.00 


Support Groups 

Support Group News Update 

Support Group Round Up 

Belfast 

We were all very proud when Fiona’s 

husband, Robbie, carried the Olympic 

torch in Portadown - they have 

tirelessly used the Torch to fundraise 

for the Northern Ireland Rare Disease 

Partnership (NIRDP). There were a 

few members of the Partnership who 

took part in the Torch relay and our 

congratulations to them all. 

Sadly, our group numbers have 

dropped considerably. The meetings 

are a great source of information, as 

members have a wealth of experience as 

carers. Fiona and I will try to meet with 

anyone who wishes to see us. 

We trust you all have a great summer 

and look forward to seeing you in 

November. 

PS We’d also like to congratulate 

Stephen and Belinda Parker on their 

marriage and wish them every success in 

the future. 

Brentwood 

This September, it was our first 

anniversary! And to mark the occasion, 

Dr.Malaspina, Consultant Neurologist 

from Barts, will come to talk to us about 

PSP and current research issues in which 

members may like to become involved. 

We usually have between 10 and 22 

people attending our meetings along 

with one or two new ‘attendees’, who 

may be people with PSP or family 


members. We seem to have established 

a core group who attend regularly and 

others who drop in and out as they are 

able – all are welcome. 

We have had organised speakers 

(as requested by group members) on 

topics ranging from speech therapy, PSP 

Specialist Care Advisers, carers’ support 

and benefits information. We were 

pleased to welcome Dean Joy (from PSPA 

fundraising) who gave an interesting 

talk which made us all feel part of the 

bigger picture - as we try to ‘do our bit’ 

with monthly raffles and have secured a 

generous donation from Easterford Lodge 

of The Essex Masons. 

Please note: There won’t be a meeting 

in November or December. 

Kent 

Ever since my husband was diagnosed 

with PSP in 2010 I found myself struggling 

to deal with the impact of this disease on 

both our lives. Living in East Kent meant 

that I was unable to attend our nearest 

support group in London, but felt sure 

there must be other people in the area 

who were in a similar position so I decided 

that I would set up a group closer to 

home. Our first meeting took place on 9 th 

July, and although there was a modest 

number who attended, I feel confident 

that future meetings will evolve and 

develop. 

Our meeting was supported by Jan 

Brittain from PSPA who gave an overview 

of developments in the Association. She 

explained about the recently launched 

‘care pathway’ and standards of care for 

PSP. The group also exchanged tips to 

help individuals with daily tasks, including 

the use of a radiator brush to assist with 

washing between toes and a croc clip 

to hold a serviette in place. I hope that 

this support group will enable people 

affected by PSP and their carers to share 

experiences and enjoy a cup of tea 

together. 

Loughborough 

A group of seven met at Kathryn Timmons’ 

home (4 other people expressed interest 

but were unable to attend). Sharon 

Schillerstrom, Helpline and Information 

Services Manager from PSPA joined 

us to explain her new role within the 

organisation. We tried to keep the tone 

of the meeting positive and shared 

experiences that have helped both 

patients and carers to lead as normal a life 

as possible. 

We decided that we would continue 

to meet and had our next meeting on 

Monday, September 17 th at 2pm in Barrow 

upon Soar. For future meetings, we would 

be very happy to welcome any other 

people with an interest in PSP to share 

support - and cake! 

Morpeth 

Although the turnout was fewer than at 

the previous meeting, we were still about 

12 people strong, and fortunate to have 2 

professionals in our midst. 

We were very pleased to have with 

us again Dr. Chris Morris, of Newcastle 

University, who is also a member of 

the Dementia and Neurodegenerative 

Diseases Group. Dr. Morris gave some 

useful insights into the brain and visual 

problems in PSP sufferers. We also 

welcomed a new guest speaker, Ms. 

Anne Stark Mitchell, who is a Speech and 

Language Therapist at Morpeth Cottage 

Hospital. Anne spoke at length on matters 

relating to speech and swallowing and 

fielded various questions throughout. 

We covered a range of topics in our 

discussion circle, and it was useful to 

exchange experiences as carers and 

patients. It was reassuring to discover that, 

as individual as the progression of PSP can 

be, there is a wide network of help and 

support groups and medical advice out 

there for all those who need to access it. 

Our thanks once again to Anne Wilson 

and Tim Rawsthorne for hosting the 

meeting. 

Date of next meeting, Tuesday, 9 th 

October 2012, same venue in Stannington.

Northampton 

The Group meets on the last Saturday of 

each month at either 10.30am or 2.30pm 

at Grangefield Residential Care Home, 

Earls Barton, NN6 0HE. 

We are a lively bunch and as well as 

offering support to each other, organise 

fundraising events and social evenings. 

On 28 th July a successful evening took 

place at Tea-zels in Harrold which raised 

nearly £800 

Group members Shirley, Wendy and 

Sue also took part in a craft fair in East 

Hunsbury selling home made jams, 

hand made cards and PSP merchandise. 

Between them they raised over £200. 

In June, Mel Smith, the Parkinson’s 

Nurse came along to the meeting 

and in May, Cheryl Corrodus from 

Northamptonshire Neurology Team 

joined us 

The group always welcomes new 

members and is looking for volunteers 

to help. 

For more information, email Peter. 

Daniels1957@hotmail.co.uk or call 

07917823279. There’s always a warm 

welcome and we look forward to 

seeing members old and new at future 

meetings. 

Norwich 

The third meeting of our PSP and CBD 

support group took place at Stoke Holy 

Cross on the 7th July. The meeting was 

well attended and many items were 

discussed. Individuals advised about 

the difficulty in getting wheelchairs and 

The Red Cross seemed to be a good 

starting point. Insurance issues and 

experiences were discussed and the PSP 

listing had been found to be very useful. 

The meeting was very upbeat and all 

attending offered some contribution. 

Fundraising was discussed and the 

whole group thought it was a positive 

step to promote awareness of PSP and 

CBD, through various fundraising events. 

For more information, contact Linda 

Moore on 01502 516757. 


Pocklington 

Hello from Pocklington! We share in lots 

of love, care, fellowship, kindness and 

hugs. 

Events to tell you about… 

Saturday 10 th November we have 

our own local, international pianist to 

entertain us at the Methodist Church 

in Pock from 7.30pm. Best music of all 

types, plus our trio of 10-year old lads 

who are most talented. 

And some time, when we have a 

spare minute, we will have a bring and 

share lunch. 

We’re already planning events for next 

year, including an event to be staged by 

The Right Honourable, The Lord Mayor 

of York and the Lady Mayoress, along 

with the Sheriff and his lady. Watch this 

space for details… 

Wimbledon 

Held monthly, the South West London 

Support Group is held in Wimbledon 

and since its first meeting in April 2012, 

has steadily grown, and now has around 

20 members. 

At the last meeting in July, Dr. Marie- 

Helene Marion, consultant neurologist, 

specialising in PSP, CBD and Parkinson’s 

disease, was the guest speaker. Previous 

speakers include the Parkinson’s nurse 

for the area, and Cameron Wood, the 

Director for Development, from the 

PSPA. 

We aim for the meetings to 

be informal and friendly and for them 

to give members the opportunity 

to gather important and useful 

information, ask questions, and share 

experiences and problems with others 

diagnosed with PSP / CBD, carers, and 

family members. Collectively, we find 

that we offer each other support, advice 

and friendship. 

The meetings are held on Saturdays 

at Drake House in Wimbledon. Dates 

for the remainder of the year are as 

follows: 20 October, 24 November and 

15 December. The Group also plans 

to have one or two additional social 

occasions during the remainder of the 

year. 

For further information please contact: 

Marisa Robertson, email - marisa_ 

robertson@hotmail.com, mobile - 07813 

094 530. 

Please come along and join us! We look 

forward to welcoming new members! 

Contacts 

Office: 

Tel: 01327 322410 

Fax: 01327 322412 

Email: psp@pspassociation.org.uk 

Website: www.pspassociation.org.uk 

Support Groups: 

Debbie Benadie, Administrative 

Support Officer: 01327 322410 

debbie.benadie@pspassociation. 

org.uk 

New Helpline: 

0300 0110 122 

Make your voice 

heard 

PSP Matters, the PSPA 

magazine, is published three 

times a year. The Editor is always 

interested in your comments 

and welcomes potential 

contributions for future issues. 

Material may have to be edited 

prior to publication. 

Please send your contributions 

to psp@pspassociation.org.uk 

or write to: 

The PSP Association, 

FREEPOST RSLR-ZTGA-HHAU 

Towcester NN12 6BX 


Where there’s a Will there’s a way… 

A gift in your Will to The PSP Association is a gift that will make a 

difference to others in the future. 

Once you’ve looked after your family and friends please think 

about leaving a legacy to The PSP Association. 

Every legacy we receive makes a real difference to the lives of 

people with PSP and CBD. It also means we can continue to fund 

vital research to identify the causes, develop effective treatments 

and find a cure. 

Legacies also allow us to continue to develop our work in line 

with the needs of people living with PSP and CBD and their 

families and give us the ammunition to fight for a world free of 

both these diseases. 

Your legacy to the PSP Association will have a lasting impact. 

For further information please call us on 01327 356132 or email 

cameron.wood@pspassociation.org.uk 

PSP Matters Autumn 2012 - issue 55

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