The Peterborough Evening Telegraph
‘Forgotten’ families in need of more support
Families in Peterborough caring for disabled adults are among those who have suffered from a reduction in Government support, a new survey has found.
The research 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 onein three (34 per cent) still waiting for it to be reinstated,
While the pandemic has been a challenging time for so manyfamilies, 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 deniedaccess to vital community services such as medical treatment, day centres and support at home.
Sense is now calling on the Governmenttoadequatelyresourcelocalauthoritiestoprovide better support for these families.
Among those struggling are Lynne and George Earth, whocarefor their 24-year-old son, George, whohascomplex 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 havingtotaketemporaryleave 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 washardforusfromthe beginning. George seemed quite happy at first. I think he thoughtitwasaholiday. Then, all of a sudden, his health and wellbeing started to deteriorate. He was showing signs of majoranxiety, suchasrubbing hiseyes, andthenbecamevery withdrawn and has started sleeping a lot. Without the level of activity and stimulation George gets from visiting thedaycentre, hejuststarts to vegetate. It’s so difficult to see himgofromsmilingandbeing excited about the day, to how he currently is.”
Lynne has found support throughanonlinegroupsetup by the day centre to help with herstressandGeorgewilltrial 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 confirmthecentrewouldhave toclose, weweredevastated. 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 anenvironment 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’llbeupthecreekwithout a paddle. There is simply no provision in my absence. Jo and I can’t afford to get ill.
“Thedaycentreofferedonline 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 familytakingonedayatatime, but by the fourth week, with Kerrianne’s wellbeing deteriorating, things became very difficult. Kerrianne became withdrawn. Thatwasthemost difficultmoment. Seeingyour 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 careforsomeone. It’s physically and emotionally exhausting.”
Kerrianne has adjusted to hernewroutinebutthefamily remaininlimbo. Theyareunable to leave their homeandare awaitingtheresultsofhowthe 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’snopandemic. Butthere are families like ours that remain in lockdown and are not seen. I can see some light at theendofthetunnelandhope we’re through the worst of it. Honestly, I don’t know how we’ll cope if we’re not.”
Sense chief executive, RichardKramer, 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 breakfromcaringandfeelisolated 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 wellbeingsufferingasaresult.
“The Government must take action to reinstate the care and support that families needsuchasshortbreaks.
“We need to see clear and increased communication withdisabledpeopleandtheir families and sufficient funding, support and resources to local authorities toflexiblydeliver 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