Author: Neil Armstrong

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 www.disabilitynewsservice.com/ 15 October 2020

Disabled people who have been shielding at home say they are having to rely on peer support and their own judgement to protect themselves from the pandemic, after despairing at the lack of clear government guidance.

Many of those who have shielded from the virus, often without pause since March, said this week that they had no confidence in Boris Johnson and his government.

Among their concerns are the lack of access to testing and personal protective equipment (PPE) for their personal assistants (PAs), and the difficulty of securing food deliveries, as the number of COVID-19 cases across the country continues to rise.

The grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL) said it was “very concerned” about the impact of a potential second national lockdown on disabled people who are still shielding, and their families.

One member said: “From the beginning of the pandemic, the government’s guidance and advice has been unclear, confusing and inaccessible, which has only added to the anxiety many of us feel.”

BRIL founder Mark Williams said the government’s mixed messages” were “putting people at harm”.

Another BRIL member said: “Disabled people have told us they do not trust the government, and are shielding regardless of the constantly changing regulations.”

A BRIL spokesperson added: “The experience of disabled people and people with chronic illness during the first lockdown, both those who were included on shielding lists and those who were missed off, has been ignored.

“As one member said: ‘If we are going to be shielded – they need to get it right. There are three of us who shielded, but we didn’t get the letter. It seemed that it was very ad hoc.’

“This cannot happen again. The government has a duty to directly consult with us and our organisations. A failure to do this will have deadly consequences.”

Disabled campaigner Fleur Perry, who has not left her home for more than six months, said: “I feel like there’s less information available than before.

“I still haven’t been out since March, and I doubt I’ll be going out for the rest of the year unless there’s a dramatic improvement somehow.

“Even though case numbers are rising, there’s been no update on precautions for shielders.

“The guidance makes it very clear that it’s now people’s choice how safe they want to feel, rather than a team effort.

“We’re going to have to continue to support one another in finding information and resources and new ways of doing things. Until the government steps up, it’s up to us.”

Baroness [Jane] Campbell, a disabled crossbench peer, who spent months shielding, said: “I think we all need to make our own decisions about our safety and continue to be very careful when mixing with those that we do not have to.

“What government still doesn’t appear to understand, is that disabled people who require care/support of another person, whether that be a PA, agency care, informal carer etc, cannot self-isolate.

“Therefore, we should be able to have priority access to testing both for ourselves and their essential support people. Plus, easy access to PPE.

“We are on the frontline and don’t want to become metaphorical cannon fodder again if the virus returns with a vengeance in the winter.”

She said that one of her PAs had had a cold recently and wanted to check that she was safe to work but was denied a test.

Baroness Campbell said she had tried for six weeks during the height of the pandemic to obtain basic gloves, masks and aprons, and by June had received just one box of gloves.

She added: “I have now sourced my own, at a cost, but I can afford it – many can’t.”

Fazilet Hadi, head of policy for Disability Rights UK, said: “Shielders have been left adrift since the protections granted to them at the start of lockdown were removed in late summer.

“With increases in the rate of infection and hospital admissions, and with great swathes of the population in local lockdowns, the government is failing to support and protect those who are clinically vulnerable to the virus.

“DR UK has asked the government to produce guidance on shielding for local authorities, health bodies and employers, and to give financial, practical and emotional support to those individuals who want to shield on the basis of their individual medical needs.

“We are particularly concerned for those who can’t work from home and are required to return to work.

“Many people have already had to choose between their life and their livelihood. As infection rates rise and the furlough period ends on 31 October, more people will face this dilemma.”

The current government advice to the millions of disabled people in England who have previously been told they are “clinically extremely vulnerable” (CEV) is that they should continue to “take precautions” but “do not need to shield at the moment”.

Areas where there is a local lockdown have “specific guidance” for shielders, but the advice for shielders yesterday (Wednesday) in Bolton, Greater Manchester, the north-east of England, the West Midlands and West Yorkshire, was matching that for the rest of the country, other than a warning that “it is important that you continue to take precautions”.

In Leicester and some parts of the north-west of England, those who are CEV have been advised to shield until 5 October, when “formal shielding” will be paused and they will be given guidance locally, while being advised to continue to “take precautions”.

Vicky Foxcroft, Labour’s shadow minister for disabled people, who shielded for several months during the summer, has written to health and social care secretary Matt Hancock with her concerns about the “ambiguity” that remains about support for CEV people, including in the areas where there has been a local lockdown.

She also raised concerns about those disabled employees unable to return to work, including the inadequate level of statutory sick pay, the failure of the chancellor’s new less-generous furlough scheme to mention CEV people, and continuing concerns over the rates of benefits.

She told Hancock that he had failed to answer when asked in the House of Commons for his advice to shielders, and called on him to “clarify this advice urgently, so that CEV people are not once again made to feel like an afterthought”.

Kathy Bole, co-chair of Disability Labour, said she was worried about the support that cash-strapped local authorities would be able to provide during local lockdowns, and the prospect of further cuts to social care.

She said: “I am shielding because my husband is extremely vulnerable. I have gone out twice in the last six weeks.

“I am not comfortable at all with the mask arrangements and how many are just not wearing them. I don’t know how I will cope if he gets ill.

“My own mental health is not doing well and that is because I have no faith in anything the government says.

“I know so many disabled people who will not go out and if there is no one to help them with shopping and the like, we will see many more people die.”

Fran Springfield, her co-chair, said she shared Boles’s concerns on shielding.

She added: “I have continued to shield, like many of my friends. I’m only leaving home for urgent medical appointments.

“I’m appalled by people not wearing masks and not social distancing, putting people like me at risk.

“We should be following medical science and the respected experts. The government must not be allowed to put lives before profit.

“I have no faith that decisions will be made in the best interests of disabled people.”

She added: “In Lambeth, the mutual aid groups that were so busy and supportive at the beginning of the pandemic are now suffering from volunteer fatigue, donations have dried up and it’s difficult to find people willing to help out.

“I’m noticing too that greedy shoppers are now causing supermarkets to limit purchases of essentials.

“I still have limited choices when I’m trying to shop online and eight-hour delivery slots. Totally useless for anyone who needs a PA or carer to put away frozen foods.”

She said she agreed with London’s mayor, Sadiq Khan, that the capital should be placed under a local lockdown.

Vici Richardson, community care and personalisation advisor for the disabled people’s organisation Disability North, said there were “so many mixed messages and no real guidance”, while the local lockdowns had caused “further confusion”.

Richardson, who has a disabled teenage son who remains on the CEV list, said: “There has been nothing mentioned on any of our local authority communications about shielding, and we are in a high-risk area.”

Her son’s clinicians have received no guidance to pass to the family that they should reshield so they have been “left to make our own judgements”.

She said: “Some of the disabled people I work with stopped PAs coming in from March to August, then they began to bring them back in.

“Some of these are already making the difficult decisions to stop them, but with furlough ending and many people back in work, the network they may have depended on in March is not there.”

She said some disabled people with PAs were still struggling to access the correct PPE.

Her family has been told to source its own PPE, and use direct payments funding to do so, but that they can go back to the council for help if they struggle, although she said other local authorities were supplying PPE to disabled people directly.

She said there were also concerns over shopping deliveries.

She said: “Already disabled people who managed to get back delivery slots are now struggling again and because they aren’t on the clinically vulnerable list, they can’t have priority.”

Disabled campaigner and retired Paralympian Chris Channon, another on the CEV list, said he was continuing to shield, despite the government’s advice.

He said the prime minister, Boris Johnson, had “so muddled the waters it’s difficult for anyone to have any real confidence in anything that he and his ministers are saying.

“Just days after telling office workers it was ok to return to the workplace he suddenly instructs them to work from home while, at the same time, telling those of us who are shielding that it was OK to go out.”

Although he managed to book a delivery from Sainsbury’s last week for the first time since March, he said he found the isolation “difficult to deal with at times” although “in many respects I’m lucky as I still feel in control”.

He said be believed the government should reinstate the delivery of food parcels for CEV people and enable a “clear line of communication” between health experts and those in the CEV group so they could hear from someone who “doesn’t act on behalf of the government”.

*For sources of information and support during the coronavirus crisis, visit the DNS advice and information page

News provided by John Pring at www.disabilitynewsservice.com/ 1 October 2020

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Having good mental health helps us relax more, achieve more and enjoy our lives more. The NHS have expert advice and practical tips to help you look after your mental health and wellbeing, just click on the following link:

https://www.nhs.uk/oneyou/every-mind-matters

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Disabled people who have been shielding from coronavirus since March are expressing significant doubts about government advice that says that – from Saturday (1 August) – they will no longer need to do so.

The government announced on 22 June that the 2.2 million people in England who had been placed in the “clinically extremely vulnerable” group would no longer need to shield from 1 August, although they should continue to follow strict social distancing measures.

It also said that its shielding support package – including free deliveries of food boxes, and medicine deliveries by community pharmacies – would end tomorrow (31 July).

And those who were shielding but could not work from home were told they could return to their jobs from Saturday (1 August) if their workplace was “COVID secure”.

In the wake of the 22 June announcement, disabled people and disabled people’s organisations told Disability News Service (DNS) that the decision to further ease measures that had been protecting hundreds of thousands of people with impairments and long-term health conditions had left them “stunned and anxious”.

Now, with 1 August just two days away, DNS has asked the same disabled people and DPOs whether their views have changed since late June.

But with the first suggestions that cases of COVID-19 are slowly beginning to creep upwards again across the country, they have expressed significant concerns about the end of the support package and the suggestion that they and others can now stop shielding.

Fazilet Hadi, head of policy for Disability Rights UK (DR UK), said last month that it was not right that those who had been shielding should be asked to “choose between their life and their livelihood” from 1 August.

This week, she said DR UK remained “extremely concerned” about the government’s “blanket approach to lifting shielding”.

This means, she said, that doctors cannot recommend that shielding continues in particular cases; there are no exceptions for those shielders who would have to use public transport if they returned to work; and there is no guidance on “what happens if the workplace cannot be made safe and working from home is not an option.

She also pointed out that there are no special provisions for those living in areas where the reproduction rate of the virus is high.

She said: “It is also unclear what support and protection will be available to people who need to shield in the situation of future local lockdowns.”

She added: “The virus transmission rate has gone down and many of us have calculated that the risk of being out and about is worth taking.

“However, for people who are clinically susceptible, this calculation may well be different, and resuming ‘normal life’ might still be a risk they don’t feel they can take.”

The grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL) warned last month that it was “very concerned” that the government’s plans had been introduced “against scientific advice and without any consultation with disabled and chronically ill people”.

This week, although welcoming the potential positive impact on many people’s mental health of being able to leave their homes for the first time in months, BRIL still has serious concerns.

It believes the guidance on being allowed to mix with small groups outdoors “makes no sense, as we have no control over who else those people have met”, while disabled people who receive support in their own homes are now at greater risk because these care workers will have been mixing with a wider group of people than earlier in the crisis.

It is also concerned about shielders being forced to return to work and potentially being penalised by employers if they refuse to do so.

BRIL said it was concerned that the end of the government’s food box scheme could leave some disabled people without food, “as supermarkets have still not sorted out delivery slot shortages, so people will be genuinely scared that going to shops at the same time as everybody else as all the other restrictions are lifted, and with people not following guidance to wear masks, is just too risky”.

A BRIL spokesperson said: “People of colour and disabled people have been dying and have been impacted harder than other people.

“The government know this, but have done next to nothing about it.

“The message that many shielders, disabled people and people with chronic/long-term physical and mental health conditions get from the government is that they have been forgotten. A lot of people who are shielding are confused and scared.

“When the government are forced into remembering us, we are seen as a problem, a burden. There has been no attempt to involve disabled people in policy decisions.

“As a result, most of the government’s information and guidance about COVID has been late, inaccessible, inaccurate and contradictory.

“BRIL can’t think of anyone who is shielding or a deaf, disabled or chronically ill person that trusts this government.”

Vici Richardson, community care and personalisation advisor for the disabled people’s organisation Disability North, said she was not as positive or confident as she was a month ago, after hearing from disabled people in recent days.

She said: “I think there are a lot of people who remain distrustful of general advice and there is still an awful lot of anxiety, even from disabled people who are not on the shielding list.”

Some of those who have been shielding are about to return to work and are “very apprehensive”, she said.

Others feel there needs to be a return to some degree of normality and that “if we can have a bit of normality now it may make the winter easier if we have to go back into shielding”.

She said: “I have heard from a lot of parents, though, who are shielding their children/young people and they are extremely concerned about another spike come autumn/winter.

“Many are now absolutely exhausted from taking on education, care and the therapies and are worried about how they would manage a second time.”

She added: “I don’t think I have spoken to anyone over the last few months who has been advised to shield who is feeling confident about resuming a life on the outside.

“For me personally, we are going to do what we can to ensure there is a little bit of freedom and normality for our [disabled] son whilst keeping the risk down and ensuring that he is strong enough emotionally to get through the winter period if we have to fully shield again, which we have been told is very likely.”

Kathy Bole, co-chair of Disability Labour, said her thoughts on shielding had not changed in the last five weeks.

She said: “I and indeed most of the disabled people I know are still planning on shielding.”

Like DR UK, she fears what will happen after 1 August to shielders who are told to return to their offices by their bosses.

She said: “People may not be able to protect themselves.

“If a boss wants someone to return, it isn’t clear whether the employee has any route to refuse to return on the basis of health risk.

“I am not sure if there is any negotiation possible. I think that will be very tricky and those in low-paid jobs will not have the option.

“This is why people should belong to a union.”

Bole added: “I know we haven’t seen a second spike yet, but I believe that it will come.

“My feeling is people will become complacent and more people will get sick and more will die.

“Many disabled people I have spoken to are planning on staying in slightly modified shielding, only going out if absolutely necessary.

“They will continue to shield until a vaccine is found.”

She fears that this new environment, with supermarkets no longer having to reserve shopping slots for those in vulnerable situations, will mean disabled people “will once again be left behind”.

Her fellow co-chair at Disability Labour, Fran Springfield, said: “I’m not stopping shielding and the majority of the disabled people I know are not either.

“With the likelihood of a second wave – going out does not feel safe.

“My partner, who is less at risk than I am, is reporting back that many shops in London are not endorsing mask wearing and there seems to be a general reluctance to challenge those who don’t social distance either. So I’m going nowhere!”

Last month, disabled campaigner Fleur Perry said she would look at local and national data before making any decisions on whether to stop shielding on 1 August, and would “probably err on the side of caution”.

Today (Thursday), she said: “I’ve been unable to locate the data and rationale behind ending shielding.

“Yes, the number of cases has dropped in the past few months, but we’re still in a situation where hundreds of people are dying every week.

“A second wave this summer has not been ruled out.

“Do I feel safe to go where I need to go and do what I need to do? No, and it may be a while yet for me.”

Disabled campaigner and retired Paralympian Chris Channon, who himself is on the “clinically extremely vulnerable” list, said his views had not changed and he was still “petrified”.

He said: “The virus is still active, with the World Health Organization (WHO) saying that the number of people infected globally is increasing by a million every four days.

“The virus is not defeated, and neither does it obey government ministers.

“I will never feel safe until I’m covered by an effective vaccine.”

Meanwhile, new figures from the Office for National Statistics (ONS) show that the proportion of those in the clinically extremely vulnerable group who had strictly followed the shielding instructions drifted downwards in the week after the government’s 22 June announcement.

For data collected between 9 and 18 June, 83 per cent of them received no visitors except for support with personal care. But that fell to 77 per cent, for data collected between 24 and 30 June.

Over the same time period, the proportion completely following shielding guidance fell from 63 per cent to 58 per cent.

Tim Gibbs, from the ONS public services analysis team, said: “Overall we have seen that the percentage of the shielding population who have been following government guidance has fallen as government restrictions eased for the general population at the end of June.”

The figures also showed that younger disabled people have been more likely to experience a worsening of their mental health since they were advised to shield.

For those aged 75 and over, 24 per cent said their mental health had become slightly or much worse, while for those aged 30 to 39, 47 per cent said their mental health had worsened.

*For sources of information and support during the coronavirus crisis, visit the DNS advice and information page

30 July 2020.

News provided by John Pring at www.disabilitynewsservice.com