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Dementia UK supporters at the Houses of Parliament for our Fix the funding event

Fix the funding: amplifying your voices in Parliament

We took our Fix the funding message to parliament and spoke to MPs about the urgent need to review NHS continuing healthcare funding

Dementia UK’s Fix the funding campaign to improve the NHS continuing healthcare (CHC) process for people affected by dementia has gone from strength to strength since it launched in October last year. CHC is a vital source of financial support for adults with long-term, complex health needs, covering the cost of care fees. But too many families affected by dementia are missing out, with the application process not recognising their unique needs.

How incredible Dementia UK supporters are building backing for the campaign

Over 8,000 supporters have taken part in the campaign so far, with many sharing their experiences of struggling through the stressful and unfair process of applying for CHC funding. As a direct result, an incredible 96% of MPs across England have been contacted by their constituents about the urgent need for a review of CHC so families affected by dementia have fairer access to this vital funding.

Our first Fix the funding event for MPs in Parliament

On Tuesday 26th March 2024 we hosted a Fix the funding event for MPs in Parliament, alongside people with lived experience of applying for CHC for someone with dementia. Thanks to our supporters sending over 1,000 invitations, we welcomed 32 MPs and their staff members. Two of our dementia specialist Admiral Nurses, Rachel and Kensa, also attended to share their expert perspectives on supporting people affected by dementia.

At the event, Dementia UK supporter Annette gave a powerful speech about applying for CHC funding while caring for her late dad, who had vascular dementia. Annette made a clear case for the need to urgently review the CHC process.

Dementia UK supporter Annette at our Fix the funding event

Dementia UK supporter Annette at our Fix the funding event

“As a retired Child Protection Solicitor, I had acquired some skills to enable me to navigate my way through the [CHC] process. What I did not expect and what truly shocked me was the significant failing of the relevant Integrated Care Board [the organisation responsible for NHS budgets in a local area] to follow the due process, procedure and guidelines. How can the process take so long? Why is it so complicated? Why does it fail to properly address the needs of those with dementia? Families are physically and emotionally exhausted and drained due to providing care. They should not have to navigate their way through such a stressful and tortuous process.”

Rachel, a Dementia UK supporter who cared for her late dad when he was diagnosed with young onset dementia (where symptoms develop before the age of 65) also attended the event to talk to MPs about the barriers she faced when applying for CHC.

Dementia UK supporter Rachel at our Fix the funding event

Dementia UK supporter Rachel at our Fix the funding event

“The [CHC] assessors ask lots of questions about your loved one. I cried the whole way through the meeting with the assessors; I felt like I was being interviewed and was scared that if I said something wrong, we wouldn’t get the funding. It was literally a tick box exercise – it felt like Dad was just a number.”

Which MPs attended the Fix the funding event

See if your MP attended and consider sending them an email to say thank you!

We’re grateful to every MP who made it along or sent staff – many more sent apologies due to conflicting commitments and expressed support for the importance of dementia care.

If you’d like support to email your MP, contact us at campaigns@dementiauk.org

  • Andrew Western, MP for Stretford and Urmston
  • Chi Onwurah, MP for Newcastle upon Tyne Central
  • Damian Green, MP for Ashford
  • Daniel Zeichner, MP for Cambridge
  • Debbie Abrahams, MP for Oldham East and Saddleworth
  • Dr Ben Spencer, MP for Runnymede and Weybridge
  • Edward Argar, MP for Charnwood
  • Elliot Colburn, MP for Carshalton and Wallington
  • Gareth Thomas, MP for Harrow West
  • Jason McCartney, MP for Colne Valley
  • Julie Marson, MP for Hertford and Stortford
  • Justin Madders, MP for Ellesmere Port and Neston
  • Lilian Greenwood, MP for Nottingham South
  • Louie French, MP for Old Bexley and Sidcup
  • Maggie Throup, MP for Erewash
  • Maria Caulfield, MP for Lewes
  • Mary Glindon, MP for North Tyneside
  • Mims Davies, MP for Mid Sussex
  • Munira Wilson, MP for Twickenham
  • Rachael Maskell, MP for York Central
  • Richard Graham, MP for Gloucester
  • Sir Alec Shelbrooke, MP for Elmet and Rothwell
  • Sir Robert Buckland, MP for South Swindon
  • Stephanie Peacock, MP for Barnsley East
  • Stephen Timms, MP for East Ham
  • Steve Tuckwell, MP for Uxbridge and South Ruislip
  • Tom Randall, MP for Gedling
  • Staff member of Bim Afolami, MP for Hitchin and Harpenden
  • Staff member of Dame Caroline Dinenage, MP for Gosport
  • Staff member of Dr Luke Evans, MP for Bosworth
  • Staff member of Peter Aldous, MP for Waveney
  • Staff member of Ruth Edwards, MP for Rushcliffe
  • The Baroness Browning, Angela Frances Browning, member of the House of Lords

Support for accessing continuing healthcare

If you need support with applying for CHC or any other aspect of dementia, you can speak to an Admiral Nurse on our Helpline on 0800 888 6678 or email helpline@dementiauk.org. If you prefer, you can book a phone or video appointment in our virtual clinic.