Peterborough families caring for disabled adults “forgotten” amidst pandemic

The survey was carried out by national disability charity Sense and found that of the 1000 families surveyed, 75 per cent received no prior warning of their support being reduced, with one in three (34 per cent) still waiting for it to be reinstated,

While the pandemic has been a challenging time for so many families, it has hit those caring for disabled loved ones particularly hard.

Sense found that more than half (62 per cent) had to take on additional caring responsibilities during the Covid-19 pandemic, with many denied access to vital community services such as medical treatment, day centres and support at home.

Sense is now calling on the government to adequately resource local authorities to provide better support for these families.

Among those struggling are Lynne and George Earth, who care for their 24-year-old son George who has complex needs, which include an inability to speak and requiring the use of a feeding tube.

Normally, George would attend a specialist day care centre in Pinchbeck every week day, as well as receiving one hour in-home support to help with activities like washing and feeding.

With the day centre closed and carers no longer able to visit, all caring responsibilities fell to Lynne, with Nigel having to take temporary leave to support his wife.

Alongside this, the couple also had to care for their elderly parents.

Lynne said: “We were terrified of catching the virus, because then what would happen to George? We were on our own.

“It was hard for us from the beginning. George seemed quite happy at first. I think he thought it was a holiday. Then, all of a sudden, his health and wellbeing started to deteriorate.

“He was showing signs of major anxiety, such as rubbing his eyes, and then became very withdrawn and has started sleeping a lot.

“Without the level of activity and stimulation George gets from visiting the day centre, he just starts to vegetate. It’s so difficult to see him go from smiling and being excited about the day, to how he currently is.”

Lynne has found support through an online group set up by the day centre to help with her stress and George will trial two days at the centre in September but Lynne admits to being frightened about the future.

She added: “I really worry that government will think that families have coped during this period, so can make further cuts to disabled services to save money.”

Elsewhere, Mark Ward (52) who is a full-time carer to his daughter Kerrianne (26), who has epilepsy and severe learning disabilities, has also admitted to struggling.

Kerrianne had been attending a specialist centre in Spalding every week day but that option was cut and Mark refused to have carers come to the home for fear of either himself or Kerrianne’s mum, Jo, contracting the virus.

He said: “We knew the news was coming, but when the letter finally arrived to confirm the centre would have to close, we were devastated. It was like a bereavement.

“It was only then that we realised how important the centre is to us. It’s a lifeline that provides an environment for Kerrianne to have fun and develop, while we have some rest.

“I know people will say we should have got carers in to support us, but our biggest fear is Jo and I getting the virus.

“We’ll be up the creek without a paddle. There is simply no provision in my absence. Jo and I can’t afford to get ill.

“The day centre offered online support, which will have been great for some people but it’s not really suitable for Kerrianne, who really needs one to one support.

“The first few weeks were ok, with the family taking one day at a time, but by the fourth week, with Kerrianne’s wellbeing deteriorating, things became very difficult.

“Kerrianne became withdrawn and started self-harming. That was the most difficult moment. Seeing your daughter hit herself because she can’t understand why she can’t go out and do the things she

enjoys. That was hard.

“People don’t realise how tiring it is providing full-time care for someone. It’s physically and emotionally exhausting.”

Kerrianne has adjusted to her new routine but the family remain in limbo. They are unable to leave their home and are awaiting the results of how the centre’s trial re-opening goes and any implications of a second wave.

He added: “It feels like things have returned to normal for everyone else in Peterborough.

“People are going about their everyday life as if there’s no pandemic. But there are families like ours that remain in lockdown and are not seen.

“I can see some light at the end of the tunnel and hope we’re through the worst of it. Honestly, I don’t know how we’ll cope if we’re not.”

Sense Chief Executive, Richard Kramer, said:“Everyone has had their life affected by this pandemic, but few have had a harder time than the families looking after disabled adults over the last five months. Many haven’t had a break from caring and feel isolated and forgotten.

“Devastating cuts to their support have meant they have suffered greatly during the pandemic and are now at breaking point.

“Disabled people’s needs have largely been forgotten, and families have had to take on greater caring responsibilities, with their health and wellbeing suffering as a result.

“The government must take action to reinstate the care and support that families need such as short breaks.

“We need to see clear and increased communication with disabled people and their families and sufficient funding, support and resources to local authorities to flexibly deliver care and support.”

Sense is asking supporters to sign their letter, calling on the Secretary of State for Health and Social Care, Matt Hancock, to take action to secure and reinstate community services and support, such as short breaks for disabled adults and their families, which can be found on the Sense homepage