Benefits, Entitlements and Grants

Our role in Fanconi Hope is to help guide people towards organisations that specialise in the right type of support.

Organisations that can help with Benefit Claims

It is certainly the case that the benefits system has been tightened up as of late 2012, and we have evidence from one of the hospitals involved in disability living allowance (DLA) claims that claims that always used to be accepted are now routinely being rejected. Applications for claims therefore now need to be much more robust, and support should be drawn from multiple sources to ensure the robustness of any claim. Note that from April 2013 DLA for adults 16-64 is being replaced by a Personal Independence Payment (PIP). More details can be found on the Contact a Family website here.

  • CLIC Sargent: Although their support is badged as being for children with cancer, we have gained agreement  with their Head Office that support for Fanconi Anaemia patients is also included. This is important as they have Social Work Teams in most of the major hospitals. Call 0300 330 0803.
  • Contact a Family
    • Have a Genetics Counsellor as well as local area staff who may be able to assist/advise you with your case.
    • Have a section on their website on Benefits and Tax Credits
    • Call Helpline on 0808 808 3555.
  • Carers UK: Help and advice on Disability Living and Carer’s Allowances.  Call Adviceline on 0808 808 7777.
  • Turn to Us:  A very good website for you to visit to see what you can claim at a glance. There is no need to register and you can get impartial advice on what you may be entitled to. Call Helpline on 0808 802 2000.
  • Tenovus Cancer Support Helpline: for patients with cancers. Call Helpline on 0808 808 1010.
  • Job Centre
  • If your child is hard of hearing, the Deaf Society has certainly helped other parents with their DLA submissions.
  • Parents of Disabled Children Bulletin Board has section for asking questions on benefits

For DLA claims it has been recommended to us that you keep a diary for a week and detail the differences  between your child’s care and mobility as compared with a fully fit child of the same age.  This can be attached to the application form.  It should also help you to complete the questions on the form.  It is important to provide as much detail as possible including up-to-date supporting medical evidence to ensure your application can be properly evaluated. Make sure you keep a copy of the whole application.

To reinforce your case, our Standards of Care for Fanconi Anaemia affected Individuals and their Families document, although primarily written for clinicians/consultants  does serve to illustrate just how much ongoing monitoring may be required, most of which is likely to be carried out in a hospital environment.  This is summarised in the Introductory section on Page v.

Organisations that can provide Grants, equipment or home makeovers

  • Turn to Us:  Search for Grants
  • Family Fund are the UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people. They can help with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and much needed family breaks together. Phone: 08449 744 099. Eligibility criteria: Those receiving one of the following – Child Tax Credit, Working Tax Credit, Income-based Job-Seeker’s Allowance, Income Support, Incapacity Benefit, Employment Support Allowance, Housing Benefit or Pension Credit.
  • Well Child helps sick children and their families throughout the UK to manage the consequences of serious illness and complex health conditions through our programme of care, support and research.  WellChild’s Helping Hands is a unique scheme offering practical support to sick children and their families through one off home improvement projects, such as a garden or bedroom makeover. When you’re caring for a sick child, re-decorating a room or adapting a garden can seem like climbing a mountain – there just aren’t enough hours in the day. With the generous help of volunteer teams from company’s situated local to our families, we are able to make a dramatic and lasting impact to the daily lives of sick children around the UK.
  • Joe Glover Trust (For children with cancer). Because we are a small charity we can react quickly to provide direct help to families when they most need it.  Whether it is helping with transport costs to and from hospital appointments, assisting with childcare costs, providing a much needed holiday during a child’s last months, or buying a concert ticket so a child can see their favourite band, we want to make a positive contribution to their lives and, if we can, introduce some fun and laughter along the way.
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