What local carers say about their experiences during the pandemic

Local carers have found the pandemic stressful, challenging and exhausting.

We asked carers of children and adults with a learning disability to share their experiences as part of a snapshot survey, conducted before the second lockdown.

More than half (56%) of the carers who took part had lost all their care with 32% losing some care.

Of those, 29% of carers said they were struggling to cope and 40% said they felt okay for only some of the time.

37% said they felt isolated and lonely during this time and 33% said they felt a bit lonely.

Who has been in touch during the pandemic and what for:

• 52% said a charity, such as Reading Mencap, had been in touch to check on welfare
• 44% a social worker,
• 28% the Council,
• 24% said other
• 52% had activity packs delivered,
• 6% had food deliveries, and
• 5% had on-line services.

The majority of carers – 80% – found these services helpful.

The results of the survey have been shared to Reading Borough Council, who will ensure the responses are fed into relevant services in the Council.

What carers said:

“I have worked SO hard, learning and implementing SO much. I am fed up with stories of people finding time for new hobbies. I have been busier than ever.”

“You’re on your own basically.”

“You realise how alone you are in caring for someone. No-one cares if you get sick or plans anything to cover that. No-one carers if you’re coping for a special needs person who does not understand. It’s been very hard.”

“My husband and I have managed caring for our disabled daughter, who is 46. Although she has been very good, I am 73 and my husband is 74. Physically and mentally it has been a bit difficult as we have to do everything for her and it has been 7 months with no respite. We have no other family available. However, I would rather she is home safe with us.”

“Adult social care is a disgrace for complex physical and learning disability.”

“It has been very stressful as along with my 44-year-old severely disabled daughter, I also care for a 50-year-old significantly disabled and autistic son who can be very difficult at times and it just seems that nobody really cares or is interested. It is made really tough as I am disabled myself and in constant pain so doing housework is challenging.”

“Stressful. Don’t know what is out there for carers.”

“I am the Lasting Power of Attorney for my brother who has 24 hour care, but I manage all his care issues, his finance and health issues. I also have my brother here as often as possible (at least weekly) & make all decisions for/with him. Therefore it would have been useful for the Council to have contacted me about his care needs. They have not, even though they know I am his point of contact”

“It has been an exhausting time.”

We asked carers what more their Council could have done to help during this period:

A variety of responses were received, from ‘I don’t know’ to ‘make more effort’ and ‘I don’t know what is available’

‘We felt ignored and left behind, I bought a laptop for my son with his direct payments, which is for activities and they want him to pay it back. The laptop is very helpful for him.”

“It’s been difficult to get hold of our social worker.”

“The Council Tax office could have been a lot more helpful. Others did a good job but didn’t ‘go the extra mile’ to avoid more stress put on me – with the exception of sheltered housing – excellent! The Social Worker did more than I expected.”

“At the beginning we had one call from Social Services. That is all.”

“It has been very difficult during lockdown in particular, when we were not allowed to see one another. My brother found it very difficult and his mental health suffered terribly. His full-time carers were great, but it is only part of what was needed, since I pick up on much more than what he verbalises to his carers. He felt very lonely and isolated at times, and I just didn’t know what to do to help since we were not able to see one another because of protecting him. Consequently, I felt guilty that he was not staying here throughout the crisis, but since it happened quite suddenly this could not be arranged. Since he has complex medical needs which I always provide support for, this added another layer of challenge.”

“Could have told us we could use the Direct Payments package more flexibly and provided examples.”

“Reading Borough Council need to make it easier to complete their forms.”

“Shown an interest.”

“I am also caring for wife with dementia, so it has been challenging and other daughters have to assist in caring for daughter, supporting by having her stay with them. Only possible as they were off work due to lockdown.”

Read the results in full.

Thank you to all the carers who took the time to complete the survey. The results have been shared with Reading Borough Council, who will ensure they are fed into relevant services in the Council.

We are working with the Council to issue a Carer’s Card for use locally, which will be issued shortly.