Section 10 - Cystic Fibrosis Clinical Care Pathway

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ICA does not depend on contributions; but it is taxable. The claimant must not be earning more than £75.00 per week (2002). The partners earnings are not taken into account. Apply by using claim pack DS700. The pack and a free SAE are available from your local Benefits Agency or from the social work department. 3. Families receiving income support The award of Disability Living Allowance and Invalid Care Allowance will entitle families receiving Income Support to extra premiums as follows: Disability Living Allowance - Disabled Child Premium Invalid Care Allowance - Carer Premium Although invalid care allowance counts as income and is deducted from income support, the award of a carers premium leaves the family better off. 4. Motability Motability is a voluntary organisation set up on the initiative of the Government and intended to help people with disabilities use their Mobility Component of the Disability Living Allowance to buy or hire a car. Full details are available from Motability, 2nd Floor, Gate House, Westgate, The High, Harlow, Essex, CM20 1HR. 5. Blue Badge Scheme The Blue Badge Scheme allows a vehicle displaying a Blue Badge, and driven by a disabled person or with a disabled person as passenger a number of parking concessions. Blue Badges are available from the local authority. In order to qualify for a Blue Badge the patient must be aged 2 or over and: i) receive the Mobility Component of the Disability Living Allowance; or ii) use a vehicle supplied by a government department or be receiving a grant towards running their own car; or iii) be registered blind; or iv) have a “permanent and substantial disability which causes inability to walk or have very considerable difficulty in walking”. 6. Help with Equipment Health authorities, as part of their community health services, may provide nursing equipment such as special beds, commodes, urinals, incontinence pads, etc. Because some items may serve a dual purpose, for nursing and daily living, most health and social service authorities have a jointly agreed procedure for deciding who supplies which item. In the first instance, apply for any item via the GP, district nurse, health visitor, occupational therapist or social worker. 58
General Practitioners may prescribe only the equipment which is included on an approved list called the Schedule of Appliances and Devices in the Drug Tariff. However, an NHS consultant may prescribe any item of equipment which s/he considers is necessary as part of a patient’s treatment, e.g. nebulisers. 4.2.2 The Family Fund Trust The Family Fund Trust is financed by the Government. Any family caring for a severely mentally or physically disabled child under the age of 16 and living at home with them may apply for help. The diagnosis of CF is not a sufficient criterion unless the child is severely affected by it. The Fund is discretionary but works within general guidelines agreed with the Government. The purpose is to relieve stress arising from the day to day care of a disabled child. It can help families whose gross income is not more than £21,000 (2002) and who have savings of £8000 or less. There is no set list of items or needs covered by the Fund, except that it is not designed to replace help available from the health or local authority. Application forms are available from: The Family Fund Trust, PO Box 50, York, YO1 2ZX, Telephone: 01904 621115 or from the social work department. 4.2.3 Travel to hospital Patients and parents may be entitled to assistance with fares or other travel expenses to a hospital where they receive treatment if they are receiving Income Support or Family Credit or they are covered by the low income scheme (see below). Visiting parents who receive Income Support or meanstested Job Seekers Allowance may receive a community care grant from the Social Fund. The social work department can sometimes help with visiting fares for parents on a low income. 4.2.4 The low income scheme Parents may qualify for full help if their ‘income resources’ are less than, or the same as their requirements. If they are more than their requirements they may still qualify for some help but their capital must not exceed £8,000. If possible parents should apply for help with travel to the hospital beforehand. To do this send off Form AG1 (obtainable from Benefits Agency or a post office or the social work department). The Benefits Agency will decide whether they are entitled to full or partial help and, if they are, will 59
Page 1:
Handbook for the Management of Chil
Page 4 and 5:
Contents Introduction 1. The Cystic
Page 6 and 7:
Introduction Cystic fibrosis (CF) i
Page 8 and 9: 1.2 The Newly Diagnosed Patient The
Page 10 and 11: 15 or 16. Young adults are usually
Page 12 and 13: • Urine dipstick and analysis Inv
Page 14 and 15: Chrispin-Norman Chest X-ray Scoring
Page 16 and 17: at schools and nurseries, children
Page 18 and 19: prescription of twice daily chest p
Page 20 and 21: e reviewed at each clinic visit. Tr
Page 22 and 23: inclination of the device from the
Page 24 and 25: intensive physiotherapy prior to su
Page 26 and 27: Pseudomonas aeruginosa The acquisit
Page 28 and 29: epidemic fashion within individual
Page 30 and 31: When should it be prescribed? a) In
Page 32 and 33: 2.3.1 On the ward It is unnecessary
Page 34 and 35: only be used on children who are ab
Page 36 and 37: 2.5.2 Haemoptysis Occasional streak
Page 38 and 39: weeks then long term maintenance th
Page 40 and 41: ) Increased energy expenditure Ther
Page 42 and 43: Vitamin K is not routinely given as
Page 44 and 45: d) Post-Intestinal Surgery Infants
Page 46 and 47: For cases of persistent steatorrhoe
Page 48 and 49: • Children may be reluctant to go
Page 50 and 51: The type of feed chosen will depend
Page 52 and 53: Other conditions which should be co
Page 54 and 55: Section Four: Psychosocial Services
Page 56 and 57: physiotherapy, self managed techniq
Page 60 and 61: send them a certificate (Form AG2 o
Page 62 and 63: upon a clinical assessment, the fam
Page 64 and 65: 5.6 Population screening There has
Page 66 and 67: Section Six: Lung Transplantation 6
Page 68 and 69: 6.2 Surgical Aspects and Post-Opera
Page 70 and 71: Other complications following heart
Page 72 and 73: Diagnosis In the presence of glycos
Page 74 and 75: 7.2 Liver Disease Introduction Path
Page 76 and 77: a catastrophic event and may requir
Page 78 and 79: 7.5 Arthropathy Cystic fibrosis art
Page 80 and 81: Section Eight: Pharmacopoeia Drug I
Page 82 and 83: Gastrointestinal Individual Oral Do
Page 84 and 85: Mucolytics Individual nebulised dos
Page 86 and 87: Section Nine: Useful Names and Addr
Page 88 and 89: OR For antibiotics order Pari LC Pl
Page 90: Cystic Fibrosis Trust Booklets •
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Section 10 - Cystic Fibrosis Clinical Care Pathway

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