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Joy Watson, a celebrated dementia campaigner, and her husband Tony are now £400 per month worse off due to the shocking decision. The Department of Work and Pensions concluded that Joy is able to ‘care for herself’.
The couple have been left struggling to pay bills, and as a further insult retired Tony has also had his carer’s allowance stopped – even though he cares for Joy around the clock.
“Do they not know that dementia is a progressive disease?”
In April, Joy was assessed at their home in Greater Manchester by a DWP health worker. This followed government changes that saw claimants of Disability Living Allowance moving to the heavily criticised Personal Independence Payments.
The assessment lasted just one hour and in that time Joy did not move from the sofa. It is hard to understand how an assessment that is clearly flawed and impersonal can so easily lead to financial and emotional devastation.
Speaking to Manchester Evening News, husband Tony said:
“She struggled to remember her words, her hands shook and although we explained she can’t make meals because she forgets to turn off the gas and she can’t manage her medicine – she mixes up her evening and morning tablets – their report said she is able to look after herself.”
Joy, who ‘works tirelessly to raise awareness of the lives of hundreds of younger people living with so-called young onset dementia’, has rightly questioned the DWP’s understanding of dementia, asking:
“Do they not know that dementia is a progressive disease?”
It certainly feels that they do not understand this, as well as their clear lack of understanding of many disabilities and illnesses. Or perhaps they simply do not care.
“I feel as though I’m being penalised for trying to live well”
Due to her diagnosis Joy was forced to give up her well-loved career as a carer, yet she continued to help others by becoming a full time dementia activist. She encouraged shops in Eccles, Greater Manchester, to become ‘dementia-aware’ and has been described as ‘a prolific public speaker for positive action to enable people with dementia to live well’.
The couple have remained positive and encouraged many, however they now they feel as though they are being punished for taking a positive approach.
“I feel really as if I’m being penalised for trying to live well, I don’t think [the system] is geared up for understanding people with dementia and their needs.”
Tony went into further detail:
“Joy is an amazing woman and she has worked so hard to keep herself well – she looks great, people can’t always tell she has dementia and I can’t help feeling if she had sat on the settee and stagnated, we would be getting all these benefits now.”
When Joy was diagnosed with dementia at 54, she and Tony took it upon themselves to try their best to remain positive. She was honoured by the University of Salford for campaigning to raise awareness for those living with young onset dementia.
In 2016, Chair of the Salford Institute for Dementia at the University of Salford the Rt Hon Hazel Blears, said:
“Joy is an inspiration to everyone she meets. Her determination to be a voice for people living with dementia shines out. She has challenged the status quo and has achieved real improvements in services especially for younger Joys. Her and husband Tony make a brilliant team and deserve this honour from Salford so much.
Joy also inspired then Mayor Ian Stewart to pursue a goal of making Salford Britain’s most dementia-friendly city.
She was praised by the Tories as an ‘ambassador’ for people living with Alzheimer’s as well as being awarded the prestigious Point of Light award by Number 10, with the then Prime Minister David Cameron saying:
Since being diagnosed with Dementia, Joy has worked tirelessly to help people understand how we can all support people in our communities with dementia and Alzheimer’s.
She is an incredible ambassador for the Alzheimer’s Society, reaching a huge number of people and businesses with information and advice that will help them join the dementia Friends movement. I am delighted to recognise Joy’s service by making her the UK’s 457th Point of Light.
How will Joy be able to continue such amazing work that has clearly helped and influenced many, when she has been cut off from the benefits that allow her to get by?
Up to a year for an appeal to be heard
A DWP spokesperson said:
“Decisions for PIP are made following consideration of all the information provided by the claimant, including supporting evidence from their GP or medical specialist. Anyone that disagrees with a decision can appeal.”
However, Joy and Tony have already had an appeal rejected. In fact, their appeal returned an even lower score than the original assessment. Now they have been told it may take up to a year for a tribunal to hear another appeal.
The MP for Salford and Eccles, Rebecca Long Bailey, was ‘disgusted’ to hear what Joy and Tony have been through, and said:
“I have written to the DWP and the Secretary of State for Work and Pensions to request they look again at the decision made. Unfortunately, having seen so many cases come through my constituency office this is not a rare case.”
Remaining positive and ever inspirational, Joy is currently arranging a plan to raise money for Alzheimer’s Research by getting sponsored to ride the longest zipwire in Europe.
- If you are facing a PIP assessment, ensure that you are fully informed of the process. The Citizens Advice website gives you all the information you need to know, about both the original application and the appeals process.
- Alzheimer’s Society, Dementia UK and Alzheimer’s Research UK all provide excellent information about alzheimer’s and dementia. Their websites also tell you how you can support them, through donations and fund raising.
- Joy Watson features on Dementia Diaries – a ‘a UK-wide project that brings together people’s diverse experiences of living with dementia as a series of audio diaries’
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