I am now a former family carer and was a family carer for some 39 years.
In 1984 I met my wife to be and joined her single parent family of 2 daughters, the elder having many conditions, multiple physical disabilities, a sensory disability and severe learning disabilities due to cerebral palsy. She also had Arthritis and later received a diagnosis of Autism. Before I arrived my future wife was caring for her elder daughter with some help from her younger daughter and also an elder son, but by the time I arrived he had left to be married and have his own family.
I came not knowing anything about disabilities, let alone Learning Disabilities, so for some many months I was observing how my wife was dealing with situations and helping as I could and also going to meetings with my wife on matters relating to her elder daughter. For some good few months I just observed at these meetings, not wishing to interfere as I didn’t wish to make any mistakes and make any situation worse. But it soon became clear that this was a system through our local authority, (LA) that was not working as good as it should be. One meeting my wife was not able to attend so I went on my own and it was clear how I was made to feel that I was someone who knew nothing and be ‘putty’ in their hands, but as soon as the meeting commenced I took each person present to task and mentioned what I thought of proceedings, after that they never ignored me again.
During this time we were offered respite care, which we accepted, but in many instances we were far from happy with the care being given, so we went from one respite provider to another until we exhausted the providers available. So we withdrew from respite care completely.
But as I was working at least 5 days a week my involvement was not as great as I wished, except for evening and weekends. Around 2008 my wife’s health started to deteriorate slightly and we contacted our LA for assistance and we were offered 6 hours care per day between Mondays and Fridays and we advised that 2 persons were required for each 6 hour period so they could work together so, in affect we were given not 30 hours but 60 hours per week. We decided to take up the offer and to do it by employing the carers ourselves rather than through a provider and this was funded by a Direct Payment from our LA which I managed completely except for payroll which was arranged through a provider. We did our own recruiting and to some extent this did work, but not completely. We both knew the degree of quality care we wanted for our daughter and some we were employing did not fully deliver, so they were dismissed and replaced.
During this time I had the opportunity to reduce my working days to 3 days, so had more time to help my wife and supervise the care being given.
However, my wife’s health continued to decline and we contacted our LA for more care this time similar 6 hour shifts for Saturdays and Sundays and this time with a provider who had their own wheelchair accessible vehicle meaning the carers could take our daughter out for lunch on both Saturdays and Sundays.
Eventually my own health started to deteriorate and my wife’s further, so around 2015 we asked our LA for more care and were granted 24/7 care in our own home, which we received from another care provider. We retained the provider already giving 6 hours on Saturdays and Sundays and the persons we employed for 6 hours Monday to Friday. But the rest of the 24/7 we went to a different provider, our first choice soon became apparent was not suitable so we changed to another and this time the provider was excellent, providing carers who they thought would work well with our daughter and also ourselves, most did but some didn’t so the provider provided new persons until the full team was very suitable.
During this time my health deteriorated so I had to take early retirement.
My wife eventually succumbed to her health problems and she died in September 2020, but with the excellent carers we had my daughter was able to be looked after at home and to some extent the carers were also there for me and helped with my loss of my wife.
During all this while the carers looked after my daughter I was sharing my experiences of being in the care system with my LA and health authorities as well as many local disability charities and our local healthwatch.
Although the care for my daughter was excellent she eventually succumbed to her health problems and she too died October 2022.
This meant the carers were no longer around and for the first time in my life at 73 I was on my own, as my wife’s remaining family was in Greater Manchester and myself in South Yorkshire, distance only around 40 miles, but travel in-between was so bad, especially during Winters. However, a WhatsApp group for the carers and myself was created and so we could still keep in contact and when they can they still visit me, but mostly through WhatsApp.
I have to some extent still continued with my access to organisations and so still come forth with my experiences over the years. This I do in many instances as a ‘critical friend’, as I am not one who keeps quite, I didn’t while my daughter was alive so why should I now, for there are still many areas, especially in social care and some in health were some large improvements have to be made.
Much is down to finance, but there are so many insufficiencies of staff, poor working conditions, and the rates of pay for care workers is so very poor. In reality they should be earning £14/15 per hour as a starting point and not the current of around £11 per hour.
Many systems are so inappropriate and so need to be challenged. However, the biggest challenged is for a listening and active government, one which I have never seen and one I don’t see coming anytime soon, no matter what colour of Party it will come from. For no one is prepared to look at social care and do exactly what is required, which is immediate financing of Social Care some say £8 billion, but it is much nearer £12 billion and that can’t wait, especially to 2025. Yes, the NHS needs some financing, but if social care is not looked after it will disappear and so with it, soon after the NHS.
I believe social care will not last until 2025 and if it does, it will be so far gone, it will not be saved, so if so, the outlook for the NHS is far from promising.
I will most likely not be around, but many of you will be and it is your future, a future that of as now is not very promising.
I so wish you all well for without a listening and action taking government you will so need it.