When I heard that Wendy Mitchell had had her state funded personal independence payment (or PIP) taken away I could, sadly, believe it because I’d had much the same experience with my parents who were both denied state funding for which they quite obviously qualified. Only after a protracted battle on their behalf did I manage to beat the Kafkaesque system; dad’s funds arrived several months after he’d died.
But Wendy’s story made me really mad because the system was penalising her for doing the very thing it purported to help her to do: that is, live independently. As Wendy herself said with characteristic humour, the clue’s in the PIP’s title. As she also said, “the system is broken”.
Wendy, for those of you who don’t know her, is a clever, kind, resourceful 60-year-old woman who is a strong advocate for living as well as possible with dementia. She works tirelessly to raise awareness of the condition and to help make things better for the 850,000 odd people in the UK who share her fate. She also writes a great blog.
Diagnosed with Alzheimer’s at the age of 58, she was awarded a PIP 18 months ago to help her live independently. But following a recent reassessment the PIP – of £77 a week – was taken away.
It’s worth reminding ourselves – and more importantly the Department of Work and Pensions who removed Wendy’s PIP – what dementia (of which Alzheimer’s is the most common form) actually is. It’s a progressive, terminal condition for which there is no cure. Yet the person who assessed Wendy declared that over the past year and a half she had become better in various ways.
It is nonsensical. “How can they tell me that I am better than I was when I have deteriorated,” says Wendy.
To answer her very reasonable question is to reveal much of what is wrong with the way we as a society view dementia and treat those who have it. Too many of us (including some politicians and health and care professionals) simply don’t understand what it is or how it affects individuals. Because of this, people with the condition are discriminated against in numerous ways and their human rights ignored.
A recent report by the Dementia Policy Think Tank describes how those with dementia are denied benefits such as Blue Badges for parking and stair lifts, are pressured into leaving work without an assessment or forced to move into a care home against their wishes.
Those with the condition are less likely to receive a diagnosis than people with other terminal illnesses and, once diagnosed, face greater difficulties accessing care and support services, partly because dementia care often requires means-tested social care rather than free NHS care. Cynics, not unreasonably, call this the hidden dementia tax.
Earlier this year an Alzheimer’s Society survey revealed that those with dementia can stay in hospital seven times longer than other patients over 65 and one in three homecare workers looking after people with dementia have no training in the condition at all. Many of those in their charge are, according to the Alzheimer’s Society, “being left terrified at home in soiled clothes, surviving without hot meals and even missing vital medication”. The society has set up a petition calling on the Government to fix a system that is broken: so far, over 23,000 people have signed it and you can add your name here.
Yet all these forms of discrimination are already illegal under the 2010 Equality Act, which specifically covers dementia. Moreover, in 2011, an addition to the Act known as the Equality Duty placed the onus on public organisations to ensure that those with disabilities and certain long-term conditions, including dementia, are not discriminated against.
So why isn’t this legislation being enforced?
Because dementia is only just beginning to be appreciated for what it is. A terminal condition, not a natural part of ageing. Only now are people with the condition finding their collective voice and making themselves heard – people like Wendy.
And irony of ironies, because Wendy paddles so hard beneath the surface, finds so many effective ways to allow herself to cope and live as rewarding a life as she can, because she speaks at Alzheimer conferences and attends meetings to help improve the lot of everyone with dementia, she is penalised and declared “better”.
What sort of society does this, or allows it to happen? The answer is yours and mine.
I often respond to those who say that the best examples of innovative dementia care are patchy by arguing that excellence in this field is, by its very nature, organic and will inevitably start from the grass roots. A top-down, one-size-fits-all approach cannot deal with the unique nature of each individual’s experience of this complex condition.
But when it comes to discrimination, injustice and ignorance, I change tack. Here, the state has a role to play in enforcing the law. It must ensure that those with dementia are treated as equally and fairly as those with physical disabilities, that they are given a chance to live independently for as long as they want and can – which will aid not only them, but all of us, both financially and socially. We will be a more inclusive, rewarding and tolerant society that functions better.
When I was a young Hansard reporter at the House of Commons, I recorded lengthy debates on what was to become the 1995 Disability Discrimination Act. As the Bill passed through Parliament scores of people in wheelchairs demonstrated outside the Palace of Westminster protesting at the way they were being discriminated against.
One of them was Baroness Jane Campbell, herself a wheelchair user, who explained the thinking behind their campaign in a recent radio debate. She said that people with disabilities realised that it was not them or their condition that was the problem, but “the fact that society is not accessible and is unequal in its treatment towards disabled people”.
Now, 21 years on, we all take it for granted that buildings are wheelchair accessible, with ramps and wide enough doorways. The protesters’ campaigns, the Government’s action, the resulting legislation have helped change the public’s perception of, and attitude towards, people with disabilities. Of course they’re included in our day to day lives. Why on earth wouldn’t they be?
It is time for the Government to help nudge public opinion in the right direction when it comes to those with dementia, just as they did for those with disabilities. The Government must robustly enforce the Equality Act and the Equality Duty to stop people with dementia being overlooked, forgotten, treated badly and discriminated against.
We can’t go on as we are. It isn’t fair on Wendy or the thousands of others with dementia in this country, or their emotionally drained and hard-pressed family carers. It isn’t right.