The Lily Foundation have teamed up with the NHS Highly Specialised Service (HSS) for Mitochondrial Disorders, to bring you a new website for patients and professionals.
This website provides the following information:
- Who the HSS are
- Services they provide
- How patients and other healthcare professionals can access the HSS
- Mitochondrial disorders information for patients and families
- Mitochondrial disorders information for healthcare professionals
- Information on forthcoming events
The NHS Highly Specialised Services (HSS) for rare mitochondrial disorders provide a comprehensive high quality service for this rare group of disorders, with centres in London, Newcastle and Oxford. Each centre has international reputation for clinical care and research in mitochondrial disorders, and has an expert team of doctors and other healthcare professionals.
We are keen to make sure that families and carer’s known to The Lily Foundation are not missing out on benefits that they may be entitled to. The welfare benefits system is complex and constantly changing so we have provided links to websites with the most up to date information.
Disability Living Allowance (DLA)
Your child can claim disability living allowance (DLA) if he or she is under 16, disabled and needs extra help to look after themselves or has difficulty walking or getting around. There are two components to DLA: the care component and the mobility component. Your child can be paid one or both components, depending on their needs.
For more information: Disability Allowance
Tax credits give you financial help if you (or your partner) have dependent children and your income is low and/or you are in low-paid work of at least 16 hours a week.
For more information: Guide to tax credits
Carer's allowance is a benefit for people aged over 16 who regularly spend at least 35 hours a week caring for a disabled person. You don’t have to be related to that person or be living with them.
A young carer is someone aged 18 or under who helps look after a relative who has a condition, such as a disability.
For more information: Young carers rights
Council Tax Disabled Band Reduction Scheme
You may be eligible for the scheme if you live in a larger property than you would need if you or another occupant weren’t disabled. The property must be the main home of at least 1 disabled person. This can be an adult or a child - it doesn’t have to be the person responsible for paying the Council Tax.
Educational Health and Care Plan (EHCP)
An Education, Health and Care (EHC) plan is for children and young people aged up to 25 who need more support than is normally provided in mainstream education. The EHCP is drawn up by the local authority after an assessment.
Between the ages of 16 and 18, children with long-term health conditions will begin a ‘transition’ from child health and social care services to adult services. Planning for this transition should begin when the child is 13 or 14 years old (Year 9 at school).
For more information: Transition planning
In certain situations, respite (temporary) care may be provided by your local authority. Your local authority or local carer’s centre can give you information about local support.
For more information: Respite care
Children’s hospice care helps and supports children, young people and their families from the time of diagnosis. Hospice care is free for everyone and is often provided by charitable hospices.
Help with Travel Costs for Hospital Visits
If you are referred to hospital by your doctor, you may be able to claim a refund of reasonable travel costs under the Healthcare Travel Costs Scheme (HTCS).
For more information: Travel costs
Riding for the Disabled Association (RDA)
RDA uses horses to deliver therapy, achievement and fun to children and adults with disabilities. There are nearly 500 Groups across the UK offering a wide range of different activities.
For more information: RDA
Disability and Swimming Lessons
All children should have the opportunity to learn to swim. Different pools have different policies and so it is recommended that you contact your local pool before booking lessons.
For more information: Swimming lessons
We also have close links with the Welfare Benefits Adviser at the specialist Mitochondrial Disease clinic in Newcastle, so if you have any additional questions, please contact [email protected] for more information.