NICOLA PACULT – WRITTEN EVIDENCE (ASC0066)

I am a full-time unpaid carer for my husband, who has advanced Parkinson’s disease

It’s been a long journey over the past three to four years getting the right medical help for his condition and a lonely journey accessing help to manage his condition at home.

The NHS hospital consultant and team have been looking after him well, given the constraints on their budget and the effects of the pandemic.

He has seen the same consultant for many years, and we have every confidence in his ongoing medical treatment.

However, accessing help from our local adult social care services was left entirely up to me.

At each stage, I had to take the initiative, keep phoning round and asking people for help and advice, as I had no idea what was available in our area.

I decided to ask our (luckily excellent) GP practice for advice in the first instance and they assigned me a social prescriber, who pointed me in several directions for help.

Age UK were particularly helpful. Through them, I applied for, and was granted, Attendance Allowance for my husband and was advised to get in touch with our local council, Telford and Wrekin.

This was back in February 2021. The occupational therapy team sprang into action very quickly and we were given all the equipment my husband needed, including a hospital profile bed.

However, getting other practical and financial help and support from Telford and Wrekin has been difficult and long drawn out.

After a phone assessment in March 2021, they established that we would be self financing in the first instance and after that no help or support at all was forthcoming.

I felt that because they thought we had some savings (we are retired teachers), we didn’t need any advice on how to access any kind of help with managing at home.

They wouldn’t even give me advice on suitable commercial care agencies to contact and I was left completely to my own devices.

Eventually, I had a carer’s assessment by phone with Telford and Wrekin in August 2021 and was granted 25 hours of care, spread over six months, from a specific care agency of their choice. I am still waiting for this care to be arranged and happen.

The GP social prescriber has been chasing them up ever since, but wasn’t able to help with initial advice on suitable paid care agencies; I assume it isn’t in their remit.

I had to resort to looking up local care agencies online and phoning round.

By this time, I was feeling quite desperate from having to cope with my husband on my own.

I struck lucky on my third phone call (the phone calls were spread over several days, waiting for call backs etc).

I then checked out the credentials of the third agency on the CQC website and went ahead with arranging some much-needed care. They are excellent and I don’t know what I’d do without them.

It is, of course, costing a lot of money and we are now digging into hard-earned savings to pay for the care, including, so far, two weeks of respite care in a local Nursing Home, which again, I had to research and organise without any advice or help.

It’s a tiring and draining experience, with everything down to my persistence and having the skills required to get help.

There must be many people who are overwhelmed by the ad hoc nature of adult social care and who find it almost impossible to navigate their way through the maze.

I favour having adult social care tied in with the NHS, so that it’s free at the point of use and is funded by National Insurance and income tax/other taxes. I can’t say which tax system would be best, since it’s not my field of expertise.

27 May 2022