HELP US #FIXCHC THIS AWARENESS WEEK
This PSP & CBD Awareness Week we are highlighting the problems you’ve told us you have experiences with NHS Continuing Healthcare.
When it works, NHS Continuing Healthcare can be a lifeline for families affected by PSP & CBD.
Sadly too often CHC isn’t working as it should. As our new report, State of NHS Continuing Healthcare, shows that fewer people are being found eligible for CHC than in the past, and people are taking longer to hear a decision when they apply.
According to the most recent data, just one in five people who apply for CHC funding are given it, and 24% of people wait at least a month to hear back about their application. There are also significant postcode lotteries in England and Wales, with people in some parts of the country more than seven times less likely to receive CHC than in others.
We believe people living with PSP & CBD deserve better.
We are calling on the Government to #FixCHC so that it works for everybody living with PSP & CBD. To do this, we are asking the Government to #FixCHC by:
- Improving assessments for CHC so they take account of progressive conditions like PSP & CBD and listen to the experience of family carers
- Providing better training for healthcare professionals who undertake assessments for CHC
- Ensuring that somebody with knowledge of a person’s condition is part of their CHC assessment
- Fixing the postcode lotteries that see people with very similar needs given different support depending only on where they live
- Fully funding CHC so nobody misses out because of financial pressures in our NHS.
Please join us and campaign for change.
GET INVOLVED IN OUR #FIXCHC CAMPAIGN
You can help us call on the Government to #FixCHC by writing to local MP in England and Wales to raise awareness of the problems in CHC and asking them to back our calls for change.
Writing to your MP is easy. All you need to do is enter your postcode below and you’ll be taken to a form to write to your local MP; we’ve even provided a template you can use to give you ideas for what to write, including some key facts and our calls for change.
WRITE TO YOUR MP
You can search for your local MP by entering your postcode in the box below and clicking ‘Go’.
This will take you to WriteToThem.com. Then just scroll down and click the name of your local MP, and you’ll be taken to a text box to send your email. Write your message, using our template, add your details and send!
WriteToThem.com
Write to your Councillors, MP, MEPs, MSPs, or Welsh and London Assembly Member by entering your postcode below and clicking Go
DOWNLOAD OUR TEMPLATE LETTER
Use our template letter to reach out to your local MP.
To help your email get through to your MP and to make a real impact, please take a moment to personalise it. Write a few sentences about your own experience of PSP or CBD (or that of your loved one), how the condition has affected your life, and why fair access to NHS Continuing Healthcare matters to you. MPs are more likely to respond to genuine, individual stories.
OTHER WAYS TO SUPPORT PSP & CBD AWARENESS WEEK
JOIN OUR PATHWAY TO PROGRESS
Pathway to Progress is a UK-wide virtual event where PSPA supporters are collectively walking the 630 miles of the Southwest Coastal Path.
Anytime before 30 September, individually or as part of a team, you can take part, however you can, anywhere in the country. However far you travel, you can log it on our website. Every mile you complete will be added to our community’s progress along the path.
SHARE OUR ANIMATION
Recognising the early signs of PSP & CBD is crucial, and it starts with awareness among
health and social care professionals. This can help speed up the process of getting an accurate diagnosis by ensuring people are referred more quickly.
We’ve produced a new animation for healthcare professionals aimed at raising awareness of the signs of CBD.
Please share our ‘It could be CBD’ animation with your local GP and any other healthcare professionals you’re in touch with.
DONATE TO RESEARCH
We’ve launched our Understood Appeal to raise £2 million to help create a much-needed step change in research into PSP & CBD.
Specifically, the appeal is aiming to raise funds to help establish a quick and accurate diagnosis, an immediate treatment to slow progression of the conditions, and consistent standards of care.
Join our community fighting for change, learn more about the appeal, and donate any amount you can, big or small, below.
CONTINUING HEALTHCARE EXPERIENCES
Members of the PSP & CBD community share their experiences of apply for CHC funding.
Sandra and Bob Ruskin
Sandra Ruskin was diagnosed with PSP in 2019. Her husband Bob explains how Sandra has been denied CHC funding four times.
“Four times Sandra has been turned down for funding. She’s bedridden, needs a hoist to get her in and out of bed, has little to no mobility and her swallowing is becoming critically difficult, and she has no speech. I wonder if any of the CHC assessors we saw had any knowledge of PSP and its associated symptoms or had read any of the reports from people involved in her care.”
Susan and Stephen Whitefield
Stephen Whitefield cares for his wife Susan who was diagnosed with PSP in 2020. He explains how Susan’s CHC application was rejected, leaving the couple to fund all aspects of
her care themselves
“Ultimately, I think we’re not eligible for CHC funding because we are coping by doing it all ourselves. My own experience of CHC and hearing about other people’s experience have shown me that CHC is not fit for purpose. The system is unfair, patchy and it forces people to play games to ensure they secure the funding and the care package. The whole system is broken.”
Previous Awareness Campaigns
2024 – Show #WeCare Campaign
2023 – #BeAware of PSP & CBD
2022 – 10,000 Voices
GP Red Flag Campaign
