UK charity PSPA is backing calls to improve the support available for unpaid carers.

To do this, PSPA, the only UK charity dedicated to supporting people living with rare neuro-degenerative conditions called progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD), has launched a new awareness campaign called #WeCare.

PSPA’s #WeCare campaign aims to shine a light on the family and friends who care for loved ones living with PSP & CBD.

PSP & CBD progressively impact balance, movement, vision, speech and cognition. Right now, there are no treatments and no cure for either condition.

Currently, around 60% of people living with either disease are initially misdiagnosed with other conditions including Parkinson’s, stroke and depression.

As their condition progresses, family and friends become experts in their loved one’s condition, bridging the gaps between different health and care services, and providing an average of 26 hours of care and support every week.

Despite the level of support they provide, carers of people living with PSP & CBD face significant challenges; from balancing caring with working, getting breaks and respite from caring, getting adequate financial support and being supported by the health and care system. 72% of carers say they’re worried about their finances, and 61% say they need more support to look after their own health and well-being (according to Carers UK).

Through the #WeCare campaign, PSPA is calling on General Election candidates to commit to improve support for the unpaid carers, family and friends who are such a lifeline for people living with PSP & CBD, if they are elected to Parliament this July.

PSPA is supporting calls 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.

PSPA’s director of policy and influencing, Mark Jackson, said: “This year we’re raising awareness of the incredible work that carers of people with PSP & CBD are doing up and down the country, but also of the challenges they face. PSPA wants to see carers put at the heart of reforms to the social care system.

“Carers need a better deal and we’re not waiting until the next election to make that case – we want to let everybody who’s standing in the General Election know about the issues that PSP & CBD carers face and ask them to commit to supporting carers if they’re elected.”

Learn more about PSPA and the #WeCare campaign at: www.pspassociation.org.uk/awarenessweek-2024/

PSPA is the only UK charity dedicated to creating a better future for every affected by PSP & CBD.

They will do this by:

• providing information and support to enable families living with PSP & CBD to live their best possible lives

• improving the quality of life for people living with the condition via research and awareness raising

• putting the voice of the PSP & CBD community at the heart of what they do.

For more information, please visit www.pspassociation.org.uk

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