Campaigner on hunger strike over care package ‘shows need for reform of abusive system’

A disabled campaigner is on hunger strike in response to the failure of his local authority and the NHS to provide him with the support package he needs to “just live as a human being”.

Jimmy Telesford said his experience in Lambeth, south London, had convinced him of the need for major reform of the “abusive” and “outrageous” social care system.

He called for a new system that gives disabled people “complete control” over their support.

Telesford ate nothing between 2 October and Monday (12 October) this week and was drinking only diet 7-UP to keep himself hydrated.

He was admitted to St Thomas’s on Monday on the advice of his doctor, and agreed to take on food and fluids.

But he was discharged from hospital later the same day and restarted his hunger strike when he returned home.

He had earlier spoken to Disability News Service (DNS) from his bed at home and said that he had “nothing to lose” and was “prepared to die” unless Labour-run Lambeth council or the local NHS clinical commissioning group (through NHS continuing healthcare) provided him with the support he needed.

Telesford, who was working as an advocacy worker with a disability organisation until June, said: “I don’t want to die but I will if I cannot get the independent living support I need to live as a disabled powered wheelchair-user.

“My key concern is that I am not getting enough support. It doesn’t meet my needs and it never has. I don’t really want to carry on the way I am.

“The fact that I have to [go on hunger strike] just shows how difficult things are. I have to be prepared for the idea that I am going to die.”

He currently receives between 24 and 28 hours a week of support from Lambeth council, but believes he needs support throughout the day to ensure he can have a normal life.

He is also angry about the quality of the support he receives, and has lodged complaints about the care agency that currently provides that support.

He said: “The quality of life that you’re expected to have as a disabled person from a social services point of view is disgusting. You wouldn’t treat a dog like that.

“Even if I have another assessment, it’s not based on my needs, it’s based on what they are willing to give. It’s just care needs, and that’s it.

“Life is about a lot more than having a shower.”

He added: “We are the fifth richest country in the world. Nobody really understands what it is like to live as a disabled person in the trenches. It does your head in.

“Why can’t disabled people have complete control?”

He was given another assessment by the council after returning from hospital this week.

But he said: “They just want to fill out a form, tick a box and move on. It’s not acceptable.

“I honestly don’t think they care. I don’t think [social services] see disabled people as people.”

He had earlier warned the council not to be “under any illusion”.

He told the council: “I will go through this process 1,000 times if I have to as long as I have breath in my body I will fight Lambeth social services and their partners. Until I get what I need. Or die trying.”

He said he hoped that if he did die, it would show that “not everybody is willing to live under the oppression of the status quo”.

Inclusion London, the pan-London disabled people’s organisation, said: “We stand in solidarity with Jimmy and salute his determination to fight for the rights of disabled people. We hope he recovers soon.

“Although local authorities are in a difficult position, they still make political choices about how to prioritise their resources.

“We urge Lambeth Council to see the devastating consequences of its decisions and actions and ensure its disabled residents, including Jimmy, get appropriate social care support to live a normal life.

“Many disabled people all over the country will relate to Jimmy’s situation. The current social care system is not helping us live a good quality life.

“It is oppressive and often humiliating with many disabled people’s lives reduced to just being clean and fed.

“With a decade of budget cuts and increased demand combined with the laws that place all power in the local authorities’ hands without real and effective means to challenge, it is shocking, but not surprising, that people have to use such extreme actions to fight for their basic human rights.

“This is why we are calling for a reform of social care support; it must be based on our right to independent living and it must give disabled people true power, control and resources to live a normal life.”

A Lambeth Council spokesperson said: “Lambeth Council has worked to support Mr Telesford over an extended period of time, and we are both alarmed and concerned at the current situation.

“We are listening, and given the breadth of his concerns have offered Mr Telesford an opportunity to discuss and urgently review his services.

“Lambeth Council is determined to provide excellent quality adult services to all that need them in the borough, and remain fully committed to that pledge.”

A spokesperson for NHS South East London Clinical Commissioning Group said: “The CCG is very sorry to hear of Mr Telesford’s situation.

“His appeal against the outcome of his NHS continuing healthcare (CHC) assessment, which was made earlier in the year, unfortunately was delayed in line with national guidance issued at the start of the COVID-19 pandemic, when health and care resources were refocussed on combatting the threat to people’s health posed by the virus.

“Across the country, work is now getting underway to address those waiting for CHC assessments, including where appeals have been lodged against previous decisions.

“Locally here in south-east London, that work is now starting and Mr Telesford’s appeal will be reviewed as soon as is possible.

“We are aware that Lambeth Council’s adult social care team remains in contact with Mr Telesford and is offering him ongoing support.”

News provided by John Pring at 15 October 2020