When the cared for becomes the carer

Graeme Ellis’s experience of homecare made him determined to improve the lives of others in his situation

“I knew someone who had terminal cancer and they had their financial support taken away.”

Graeme Ellis works closely with disabled people and people who are very ill, and he’s worried about how they’re being treated. A UNISON member from Lancaster, Graeme is softly spoken and articulate, and he has more reason than most to be concerned about the state of social care.

Over 500,000 adults in the UK rely on people to visit them in their homes, to support them to live. Many are elderly, lots are disabled, and some are recovering from accidents and illnesses.

And they are being failed by the social care sector.

Homecare workers who are members of UNISON have told us they’re really worried about their clients. They feel they aren’t getting the training they need to support them, they aren’t given enough time with them (visits as short as just 15 minutes are widespread), and lots of the people they see don’t get allocated regular homecare workers.

When a person receives homecare their care worker helps them intimately, they can see them at their most vulnerable and need to understand their unique situation in order to provide the best care. That’s why having a regular homecare worker, rather than a succession of strangers, is important.

The need for such ‘continuity of care’, as it’s known in the sector, is something Graeme understands the importance of.

Struck down

It was 1984 when Graeme first started experiencing symptoms. He was diagnosed with a disease called neuropathy, which affects the nervous system. He has muscle wastage, visual impairment and hearing impairment and uses a wheelchair a lot of the time. “I could leave the front door here, get in a taxi right outside a restaurant door and sit down with a crutch, but that’s about all I could do. Otherwise I’d be falling every five yards. My legs muscles just give way.”

Graeme relies on homecare workers, but when he first needed them the service did not work well for him at all.

The agency that was employed by the council to support him sent homecare workers on a schedule that suited them, which meant Graeme spent most of his time waiting in his house for them to come round. They also didn’t prioritise continuity of care, which meant he saw a succession of strangers and would spend the little time he was allotted explaining what his needs were to each new care worker. “The time wasn’t going on care, it was going on explaining what I needed help with.”

This lack of a regular homecare worker is widespread and happens for two reasons: the first is that many of the companies providing care cut corners and don’t take the time to make sure people have regular carers; the second is that pay and conditions for care workers are so bad that the sector has extremely high turnover – according to a government report, 30% of staff leave each year.

Continuity of care

UNISON is seeking to address the lack of continuity of care for elderly and disabled people, along with other problems in the sector, through its campaign Save Care Now.

This campaign aims to sign up local councils, who are in charge of homecare, to an ‘Ethical Care Charter.’ This charter is a set of commitments that councils make, which fix minimum standards to protect the dignity and quality of life for those people who need care and the workers who care for them. It’s a simple way for councils to improve homecare for the people they are responsible for. It also saves councils money, because better homecare means fewer people need much more expensive residential care.

Graeme isn’t able to leave his home until a homecare worker has been round to support him, so when he was first receiving care from the council he spent so much time waiting in for his carers he was housebound. He describes the huge psychological impact this had on him; “I didn’t want to do anything, I didn’t want to recover.”

But then his homecare situation changed.

Graeme got a regular homecare worker. Better homecare meant he got his social life back, he was able to go to the pub and on holidays again, and he felt able to work.

Here to Support

For Graeme it was the introduction of a personal budget that improved his situation; for many people this system isn’t possible, but it is possible to improve the care that councils provide.

When Graeme’s homecare situation improved it wasn’t only his own life that was affected.

Once he was able, Graeme started looking for a job. He filled in over 200 application forms and as he struggled to find work he also battled with the complexities of form filling and bureaucracy his care involved.

Navigating these convoluted systems made Graeme realise that people with less ability than himself must struggle even more.

So, along with two friends, Graeme decided to do something about it.

He founded a charity called Here to Support, which offers help and advice to disabled people and people with learning difficulties. It helps organise their support, their homecare and generally helps them access the right services.

And he is good at it. From challenging the removal of financial support in the courts to offering employment law advice, Graeme uses his unique experience and knowledge to help vulnerable people.

The charity has been running for two years now and is going strong. Graeme describes a chaotic office buzzing with social work students there on placement – all of whom report that they enjoy their time supporting people through Graeme’s charity. Between April and July this year they helped 1,600 people and the charity is now part of  a wider partnership that supports vulnerable people called Independent Me.

Sadly, the number of people in need of Graeme’s help is increasing, but Graeme and the rest of the team will keep on helping them.

And the person with terminal cancer who had their financial support taken away? Graeme’s charity supported them and the decision was reversed.