Advocacy & Support

• Family Support Officer
• Support from other charities
• Diability Benefits
• Caring and Support
• The Benefit Enquiry Line
• The Hospital Travel Costs Scheme (HTCS)
• Health Cost Advice Lines
  

UK Family Support Officer

Joan Fletcher is our new Family Support Officer, she is a Clinical Nurse Specialist based at The Royal Manchester Children's Hospital. This is a new post and the job description will evolve with time. It is hoped that Joan will be able to meet with patients during visits to Pompe Clinics and during infusions at the LSD expert centres, where patients are unable to travel Joan will make home visits to ensure that the highest level of care is available to all UK Pompe folk.

Joan's contact details are given below.

Joan Fletcher, FSO/CNS

email: joan.fletcher@pompe.org.uk

Phone:0161 701 2601

Support from other charities

The AGSD-UK is a small charity with limited funds. We are unable to help families with financial help other than occasional reimbursement costs for travel to our annual conference. Other charities and trusts may be prepared to help with practical issues when the Social Services or NHS are unable to help.

As Pompe Disease is a neuromuscular condition with needs in common to some of the more common Muscular Dystrophies, we have developed a strong link to the Muscular Dystrophy Campaign (MDC). They will be able to help in many ways that the AGSD-UK cannot, for example:

• They have a range of useful fact sheets and other printed information on neuromuscular diseases
• They have detailed publications on mobility aids etc.
• They can advise on home adaptations and modifications
• They can search for funding from charitable trusts
• They can supply reading materials for children with neuromuscular diseases

Telephone: 020 7803 4800

email: info@muscular-dystrophy.org

web:   www.muscular-dystrophy.org

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Disability Benefits

The subject of Disability Benefits is too complex to be adequately covered in the Pompe Pages, but there is a very good guide on the internet at: http://www.direct.gov.uk/DisabledPeople/fs/en . The following is a brief summary of benefits and exemptions that may help you with the financial burden of your disability.

The Main disability and sickness benefits are:

• Disability Living Allowance (DLA). This is a benefit you can get if you need help getting around and/or looking after yourself because you are ill, disabled or terminally ill. You must claim before you reach age 65.
• Attendance Allowance (AA). This is a tax-free benefit for people aged 65 or over who have an illness or disability and need help with personal care.
• Incapacity Benefit (IB). If you can't work because of illness or disability you may be able to get Incapacity Benefit. It is paid in three weekly rates depending on how long you've been unable to work.
  
  
  
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Caring and Support

If you have someone who cares for or supports you there may be financial benefits that they will be able to claim. Carer's allowance is the most obvious but you can also nominate them for exemptions and benefits in the following:

• Blue Badge parking scheme
• The Motability Scheme
• Vehicle excise duty (car tax) exemption
• Disabled Persons Railcard

More information can be found online at: www.direct.gov.uk/CaringForSomeone/fs/en

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The Benefit Enquiry Line

This is a confidential freephone service for disabled people and carers. You can call the Benefit Enquiry Line and ask them to send you a claim pack. They can send you the claim pack in an alternative format if required - for example, Braille. They can also arrange for someone to help you fill out the form if required. Please note that the person you speak to may need to arrange for someone to phone you back.

Telephone: 0800 88 22 00
Textphone: 0800 24 33 55
You can also use the RNID Typetalk service.

The Benefit Enquiry Line is open 8.30 am to 6.30 pm Monday to Friday and 9.00 am to 1.00 pm Saturday.

Alternatively you could seek advice from your GP or Jobcentre Plus office.

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The hospital travel costs scheme (HTCS)

Financial help is available under the NHS hospital travel costs scheme (HTCS), to those patients who do not have a medical need for ambulance transport and who cannot meet the cost of travel to hospital. The scheme operates under the provisions of the National Health Service (Travelling Expenses and Remission of Charges) Regulations 1988 as amended.

It should be noted that the HTCS is an NHS scheme and local Jobcentre Plus Offices do not have any responsibilities for its operation, except for the confirmation of entitlement to benefit.

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HEALTH COST ADVICE LINES, Department of Health, NHS

For information on anything related to help with reducing NHS charges (prescriptions, eye tests, etc.), ring: 0845 850 1166

Application Form HC1, Advice leaflet HC11.

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