FAQs on benefits

Here we provide answers to the questions that people with immunodeficiency have asked about claiming a range of benefits.

Q. I’m planning to have a BMT for my PID. Can Immunodeficiency UK provide any financial support?

A. Unfortunately Immunodeficiency UK cannot offer any hardship grants at the moment.  The organisation Anthony Nolan has grants available to people affected by stem cell transplant who have limited savings.  Grants are typically under £200 and can help to meet a wide range of practical needs arising from a stem cell transplant. You can apply at https://www.anthonynolan.org/patients-and-families/get-support-us/apply-anthony-nolan-grant. You could also contact your local Citizen's Advice Bureau, the charity turn2us, which offers lists of grants available.

Q. My child is transitioning from DLA to PIP. Do you have anything to aid this process?

A. As members of “Benefits and Work” we have access to their guides which we can send to you. If you want a copy of these guides please email hello@immunodeficiencyuk.org.

Q. Can you write me a letter for me to submit to the Department of Work and Pensions (DWP) to help me get benefits?

A. A letter from Immunodeficiency UK will unfortunately bear no weight with the DWP as they won't accept unsolicited clinical information. You need to ask the DWP to obtain a specialist report and the DWP should then write with their own list of questions asking for a response.  Immunodeficiency UK can supply you with guides on how to apply for benefits – please contact us.

Q.  I’m thinking of going abroad for a while? Can I still receive my benefits whilst abroad?

A. It is important that you still contact the Department of Work and Pensions before moving. Whether you can still receive your benefit depends on what you receive, where you are going and for how long.

Q. Are patients with an immunodeficiency entitled to any benefits?

A. There is no automatic right to benefits for people affected by an immunodeficiency. The ability to claim benefits depends on how your condition affects you or your child. Please visit our website for information on claiming Personal Independence Payments (for people aged 16–64) and on Disability Living Allowance (for children up to the age of 16).

If you do decide to claim please contact us and we can send you guides to help your application.

Q: I have an immunodeficiency and wondered whether I could get any help with replacing my boiler?

A: Under the Governments ECO scheme in 2017 homeowners and tenants could have their inefficient boiler replaced other free of charge, or heavily subsidised if they meet the criteria for this scheme.

The criteria include:

  • Which means tested benefits are received by household members?

  • What type of home you live in?
How old your current boiler is?

To see if you qualify for this scheme please visit http://www.boilergrants.org.uk/

Q. What can I do to maximise my chance for appeal for Employment Support Allowance?

A. Immunodeficiency UK is a professional member of Benefits and Work and can therefore provide you with guides to help you with the process of applying for benefits. Please contact us for copies.

These guides include an Employment Support Allowance (ESA) appeal guide, a guide on ways to prevent and overturn ESA sanctions and a guide to ESA mandatory reconsiderations and appeals.

The ESA mandatory reconsiderations and appeals guide takes you through the process of mandatory reconsiderations and your appeal. Page 37 onwards gives advice about what to do at the hearing, what to say and how to act. The appeal guide contains examples of appeals submitted.

Before you go to appeal you must ask the DWP to carry out a 'mandatory reconsideration' of their decision where a different decision maker looks at the decision made and then you will receive notice as to whether the decision has changed. If it has not then you can appeal the decision.

If you are unhappy with the tribunal’s decision you can request immediately the full reasons for the tribunals decision as well as a copy of the judges notes that they took at the hearing before appealing to the upper tribunal.

Q. I’m having trouble getting personal independence payment (PIP). Can you help?

A. Our membership with Benefits and Work means we can send you guides to help with claiming benefits. For PIP these include a guide for claiming PIP and a guide to PIP appeals, a sample medical report, ways to challenge a medical report as well as a document entitled “what else can I claim” which gives information about the other benefits you can claim if you have been awarded PIP.

It is important to remember that you are not entitled to PIP just because you have an immunodeficiency. Your entitlement depends on how the condition affects your physical health.

PIP has two components; daily living and mobility with two different rates depending on how badly you are affected. 

If your initial request for PIP is denied it is often worth going to appeal with your claim.

Q. I have recently been in hospital due to my condition, combined immunodeficiency and not able to work at the moment. I have been put on statutory sick pay [SSP], which isn’t enough to support myself.  Please can you give advice on whether I am able to get some financial support?

A. You may also be entitled to Income Support if you have a low income and your SSP is less than the amount of income support you would be entitled to, although this would only happen in exceptional circumstances. 
If you pay rent, you may be able to claim housing benefit. You could also speak to your local council about getting a reduction in your council tax.

If you want to get a full benefit check, you can also contact your local Citizens Advice Bureau (CAB). If your illness continues beyond 28 weeks, you’ll no longer be entitled to SSP, but you might be entitled to Employment and Support Allowance (ESA) instead. In some areas, the new Universal Credit system is in place, so you would need to claim that instead of ESA. To find out more about any of these issues, contact your local CAB.

Updated March 2022