Help show the government #WeCare this year
In 2024, we are raising awareness of PSP & CBD by shining a light on the amazing work of carers.
Unpaid carers are a lifeline for many people living with PSP & CBD. Whether a partner, parent, child, family member or a friend, people living with the conditions often rely on a loved one for their care. Despite this, carers of people living with PSP & CBD often face significant challenges. At PSPA we recognise the vital role that family, friends and other carers play in supporting people living with PSP & CBD. We also recognise that carers need a better deal.
To help, on 3 June we launched our #WeCare campaign which calls MPs to commit to taking action to support carers.
PSPA is supporting calls made by Carers UK to:
- increase Carer’s Allowance
- introduce a new payment for older carers
- give carers a legal right to respite breaks
- improve how carers are treated by our health and care system.
GET INVOLVED IN THE #WECARE CAMPAIGN
You can help us to show #WeCare by writing to your local MP to let them know about the challenges carers of people with PSP & CBD face and asking them to support a better deal for carers if they’re elected this year. If you’d like, you can encourage your candidates to call or meet with you to hear more about your experiences.
You can find out who’s standing for election in your local area by using our search facility below. We’ve also created a template letter you can download to get you started – but we encourage you to share your own personal experience with your candidates.
SEARCH FOR YOUR NEW MP
We’ve pulled together a list of MPs for each constituency, and where possible provided an email address. If an email address isn’t available for your candidate, please use a web search facility to look contact details up.
To search for your new MPs, start typing the name of your constituency in the box below.
You can click on your MP’s profile to find their parliamentary email address.
DOWNLOAD OUR TEMPLATE LETTER
Use our template letter to reach out to your local MP.
LOG YOUR ACTIVITY ON OUR AWARENESS MAP
Whether you’re contacting your local election candidates, taking part in a Walk of Hope or getting local media coverage for PSP & CBD Awareness Week, you can let us know what you’re doing in your community to show #WeCare by adding it to our Awareness Map.
OTHER WAYS YOU CAN SHOW #WECARE
SHARE #WECARE WITH YOUR LOCAL MEDIA
Help get more people talking about how #WeCare by talking to your local newspaper or radio station.
Download our template press release with information about the campaign, that you can tailor with your own experiences or what you’ll be doing to support PSP & CBD Awareness Week, and send it to your local newspaper or radio station.#WeCare Template Press Release
SHOW #WECARE ON SOCIAL MEDIA
Throughout PSP & CBD Awareness Week and beyond we’ll be sharing stories on Facebook, Instagram and Twitter to highlight the amazing carers of people living with PSP & CBD, the vital support they give to people living with the conditions and some of the challenges they face.
You can help us spread the word among your friends, family and community by sharing these stories on your own timelines and joining the conversation yourself by adding your photo to the social media template at and sharing it on your timelines using the hashtag #WeCare.
TAKE PART IN A WALK FOR HOPE
Get out in your local community and take part in a Walk of Hope to raise awareness of PSP & CBD.
Our Walk of Hope is an awareness raising 5km walk or wheelchair push. You can take part in a local event or host your own walk with your friends, family and colleagues. Not only will your walk help raise awareness of our charity, but it’ll help raise awareness of PSP & CBD and of the work carers of people living with the conditions do.
To help make an impact on your walk, each sign-up will receive a free PSPA t-shirt to wear.
CARERS STORIES
Members of the PSP & CBD community share their caring journey, from diagnosis, accessing care support to planning ahead.
Danny’s story
Danny shares his experience of delays to receiving support as a carer and for his wife, Christine, who is living with PSP.
“I was referred for a carer’s assessment by the nurse practitioner at my GP surgery. It was three months before I had an acknowledgement of my application. You feel completely forgotten and worry if the process is working properly as you are not even sure you actually are on the list; then out of no where they ring and say they want to come around and see you. The visit took a further three months to happen, and that was supposedly being fast tracked due to Christine’s symptoms worsening. So, it was six months wait in total.”
Valerie’s story
Valerie talks about her experience of accessing support whilst caring for her husband, Alan, who is living with PSP.
“During one of our many GP visits, we were referred to the Social Prescriber service. Before Alan had even received his diagnosis, the Social Prescriber had linked us to our local services. Both Alan and I had completed assessments; me as Alan’s carer and Alan for attendance allowance. Alan was quickly awarded the highest rate of attendance allowance. I was linked up to lots of local services which have been a real help.”
Christine’s story
Recognition and understanding of how PSP & CBD impacts the whole family is important as Christine has experienced whilst trying to get help for herself and her husband who is living with PSP.
“I did apply to a local counselling service but after completing a questionnaire and a short chat they advised I wasn’t bad enough to warrant this support. I felt a bit unheard. I don’t think people fully understand the impact PSP can have on your lives. People pop around and see Chris sat in a chair looking bright, but they don’t see the full picture.
“My GP suggested a care home for respite care. But it meant I would have to organise and pay for this myself and getting dates for the respite tend to be a bit short notice.”
