A woman praised by David Cameron as an ‘ambassador’ for people living with Alzheimer’s has had her benefits stopped.
Joy Watson, from Eccles, has been left struggling to pay bills after an assessment by the Department for Work and Pensions (DWP) decided she was able to look after herself. This means she has £400 less each month.
The 59-year-old, who was diagnosed four years ago, was forced to give up her job as a carer. But showing remarkable fortitude she became a champion for people with dementia giving lectures raising awareness, teaching nursing students and showing local businesses how to help those with the condition. Her efforts earned her a doctorate and praise from the former Prime Minister Mr Cameron.
Her husband Tony says he and his wife can’t understand how anyone could think she could look after herself. Joy is unable to cook meals or even hold a cup of tea properly and mixes up vital medication if left to manage on her own.
He and Joy have worked hard to show people it is possible to enjoy life with dementia and help others.
They worry now that their efforts to keep Joy well and living the best life she is able have led directly to the benefits cuts which have left them struggling to pay their bills. They have been told it is likely to be next year before a tribunal will hear their appeal – leaving them in a desperate situation.
Speaking haltingly as she struggles to remember the right words Joy said: “I had to give up the job I loved and I don’t see any sense in this decision. 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.
“They don’t see me when I’m fretting, when I can’t do the thing I want to do.
“I have had these benefits for four years since I got the diagnosis – do they not know that dementia is a progressive disease? I try to keep well but I’m not going to get better.”
Joy was assessed by a health worker from the DWP at her home in April following the recent government changes to move claimants on Disability Support Allowance to Personal Independence Payments. (PIP).
After this assessment, Joy’s support payments were stopped.
She appealed, but was rejected and returned an even lower score than the original decision. Joy’s Personal Independence Payments were stopped, and the Carer’s Allowance her retired husband Tony received for supporting Joy was also rescinded despite him caring for her round-the-clock.
It has come as a bitter blow to the couple who after the initial shock of her diagnosis at just 54 made a decision to be as positive as possible.
Joy used her own difficult experiences whilst out shopping to create a booklet for staff in shops and banks and gave one to each business in Eccles, signing up hundreds to a dementia friendly scheme.
Although she tries to live as independently as possible Tony says Joy is unable to look after herself. When she has tried to cook she has forgotten to turn the gas on, or not put water in the pan with vegetables and most worryingly she also forgets to turn the gas off.
A couple of years ago she went away with a carer for a few days and took her evening pills in the morning leaving her like a zombie all day.
Tony said: “The assessment lasted about an hour and Joy did not move from the sofa once.
“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.
“I have tried to help Joy to be as independent as possible, to live as well as possible, she has always wanted to help others and I believe that going out and talking to people about dementia has kept her brain working – it is her passion and we are so proud of what she has achieved.
“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.”
Last year Joy was made an Honorary Doctor of the University of Salford, and was recognised with the Prime Minister’s Points of Light Award.
At the time the former Prime Minister had said: “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.”
Rebecca Long Bailey, MP for Salford and Eccles, and Shadow Secretary of State for Business, said: “It is disgusting to hear what Joy and her husband are having to go through. Not only having to adjust their lives with the continuing degenerative condition that dementia brings, but to have the safety net of Personal Independence Payments and Carers Allowance pulled from under them.”
“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. “
She called on the government to “urgently review” their policy of assessing those with dementia and stopping benefits for months leaving many with little or no money to live on.
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.”
People may get the daily living part of PIP if you need help more than half of the time with things like: preparing or eating food;washing, bathing and using the toilet; dressing and undressing; reading and communicating; managing your medicines or treatments; making decisions about money; engaging with other people.
Meanwhile Joy is trying to remain positive; throwing her energy into a plan to raise money for Alzheimer’s Research by getting sponsored to riding the longest zipwire in Europe.
Where to get help…
Caring for a loved one with dementia can be incredibly tough but there are a vast range of services out there to help.
As well as practical advice, many of these services also offer much needed clinical and emotional support to families and carers.
In the UK, support charities include the Alzheimer’s Society, Dementia UK and Alzheimer’s Research UK, all of which feature essential information on their websites. Alzheimer’s Research UK also has an infoline on 0300 1115111, which is open Monday to Friday from 9am to 5pm.
Admiral Nurses are registered nurses and experts in dementia care who work in the community, care homes, hospitals and hospices, providing support to people living with the disease and their families. The Admiral Nursing Direct helpline is on 0800 888 6678 and is open seven days a week from 9am to 5pm, also from 6pm to 9pm on Wednesday and Thursday.
Other support services include online forums, such as the Alzheimer’s Society’s Talking Point, the Carers UK forum and Carers Trust forum.
Further details of ways to access support can be found at www.nhs.uk/Conditions/dementia-guide/Pages/dementia-help-and-support.aspx .