Campaigners call for investment in training for social care staff, to improve care for people with Parkinson’s-related dementia

It’s been a year since we published our report on the state of care received by people with Parkinson’s-related dementia, Nobody really knows us. Download our Nobody really knows us report (PDF, 2.3MB).

It revealed that despite dementia affecting around a third of people with Parkinson’s, the health and social care system is failing them.  

Our report found that only 25% of unpaid carers of people with Parkinson's-related dementia feel that social care professionals supporting their loved ones understand the condition. Upskilling the social care workforce is key to improving care people with Parkinson’s-related dementia receive. 

Earlier this year the UK government announced £500m funding to develop the skills of the social care workforce in England. Since then, we have:

• written to the care minister
• organised a letter from supportive MPs and peers to the minister
• had questions tabled in parliament 
• met with civil servants to urge them to allocate a portion of this funding for dedicated training on Parkinson's-related dementia.

In all of these interactions, the UK government has welcomed our interest, but have made no firm commitment on allocating funds to train social care staff on Parkinson’s and Parkinson’s-related dementia in England.

Read more about the £500 million to develop the adult social care workforce announcement on the GOV.UK website.

Activating our community

Starting at the Brighton Marathon and throughout the summer, Parkinson’s UK local groups and branches across England have been asking their members and supporters to sign postcards to the care minister. We want to show how important this issue is to our community. 

4 of our campaigners represented the over 1,200 people with Parkinson’s, carers and supporters of the charity who signed these postcards, as we handed them in to the Department of Health and Social Care.

What this means to our community

Charlie, whose father has Parkinson’s-related dementia was part of our delegation. He said:

"It was the anxiety of not knowing, some of the paid carers knew a lot, some didn’t know anything at all. Week to week we didn’t know who was coming. It was easier for us to pick up the slack as a family rather than try and train the paid carers ourselves...

"Investment into training for paid carers is so important. Just having a basic understanding of Parkinson’s and Parkinson’s-related dementia would make such a difference."

Garth, who lives with Parkinson's, said:

"I have Parkinson’s myself, there’s a high chance I could develop dementia. It’s vital we improve the care for people in our community with the condition. I used to be a nurse, I’ve seen first-hand the impact poor care can have on people with Parkinson’s. The training social care workers receive isn’t good enough, it has to improve."

John, a carer for his parents who came from Northumberland to support the campaign said:

"None of my parents’ paid carers had received formal training on how to deal with Parkinson’s dementia. I was so lucky they helped us despite this and how challenging it was. My mum had problems with hallucinations, she could be quite aggressive, it was really hard to take. Looking back I wish the carers had had help too."

And Clare, a former carer said:

"My aunt had Parkinson’s and I cared for her, she developed dementia and had to go into a nursing home in the end. I want greater recognition of the social care workers who care for people with these challenging symptoms."

Next steps

We weren’t able to speak to the care minister at the hand-in, but we will be meeting with officials from the Department of Health and Social Care in the coming weeks.

We are keen to secure a commitment that the UK government will allocate funding for content on Parkinson’s-related dementia. This will ensure the social care workforce gets the training they so desperately need to provide high quality care to people with the condition.