Financial Support
Helen Morris presented at the Metabolic Support UK conference on financial support available in the UK. Not all the advice was relevant to PKU, however, a low-protein diet is used to treat several metabolic conditions. Please check to see if you might be eligible for extra support.
The need for support
Helen reported that enquires about finding financial support from families with IMDs in the UK had quadrupled over the last year. For this reason, the first session in the MSUK annual conference was dedicated to an overview of benefits and eligibility. You can find more about the MSUK and their conference here.
What support am I eligible for?
The most common benefits available to the IMD community are:
- DLA (under 16s)
- Personal Independence Allowance (PIP)
- Carers Allowance
- Universal credit
- Other benefits available to those on the above.
The best place to seek help are Benefit calculators, as these often suggest benefits you can claim which are linked to your current allowances.
Benefits Calculators
These are independent, free, and anonymous. They will check the benefits you might be entitled to, and how these might vary with a change of circumstance.
It is worth checking these if you are already received benefits, as many people who care for others with a benefit may be entitled to the Carers allowance.
Tips for applying
- Fill in the forms in pencil first, or write your answers on another piece of paper initially. This means you can refine them or correct mistakes without needing new forms.
- Take your time, and be thorough. Think of everything required in each step of the day. You might want to tackle one thing at a time.
- Keep a copy of your forms! 8/10 people who are appealing have not kept a copy of their form, which hinders their appeal.
- Turn2Us has information to help you when applying for PIP. https://pip.turn2us.org.uk/
MSUK and NSPKU are there to help
If you have any questions, the MSUK team are there to help.https://metabolicsupportuk.org/support-information/contact/ Plus, they have online resources, including information on how the latest budget might affect those with IMDs.
The NSPKU has a confidential phone line to help with PKU, and you can find out more at: https://nspku.org/benefits/
Finding support in other countries
Ireland: PKU Association of Ireland
Europe: ESPKU - The European Society for PKU and allied disorders treated as PKU. A grouping of national and regional associations which were created by parents across 31 countries. Find your national or regional organisation here: https://www.espku.org/who-we-are/interesting-stuff/
USA: NPKUA - National PKU Alliance
Canada: CanPKU
Australia & Aotearoa/NZ: ASIEM - Australasian Society for Inborn Errors of Metabolism
Member discussion