Yippee the blog is back

Hello everybody, why so quiet you may ask, it’s easy to answer in one word CARERS. The last time I published my blog was when I wrote about SMD having been diagnosed with optic neuritis, so let me start with an update on that. SMD is now back at work full time and managing to deal with everything thrown at her despite not having her full vision back, she can now see in colour but her depth of vision is an issue.

Hubby and SMD will always play a prominent role in my care, I have 24 hours of PA cover but currently only have 16.5 hours of Domiciliary care, hubby does the lions share and is my main carer for 127.5 hours a week.

The situation with my care is another story, the day I published my last blog was the day that the care company who I had been with since moving to Hayling came to an end. Unfortunately they no longer had capacity to manage my care (I say unfortunately but I’m not surprised everything was falling apart, the CQC inspected them and rated them as unsatisfactory). The same care company also employed my PA and whilst there were no issues with my PA there were issues in the manner that she was treated by the care company and subsequently left. 

Into action came my emergency care, I have no qualm in mentioning my emergency care team by name as they have been brilliant. QualitCare are a company who deals with discharges from a hospital and have six weeks of care either because after that they don’t need anymore or six weeks until permanent alternative care is found. Typical me I am yet another case who cannot be found a company who has capacity to take on my care needs especially as I am a double handed call. Hampshire Social Services are working hard with the brokers to find me a company who has capacity, in fact what we are trying to do is convince QualitCare to take me on permanently. I seem to have a core team of about five carers, and in SMDs words “it’s great to hear all the laughter that comes from the bedroom when the carers are here”. All my carers have recently moved to the UK from Zimbabwe, they all have a great sense of humour and have got to know me and hubby and even SMD when she comes and stays really well. The only real issue is I haven’t had a shower for 13 weeks as unfortunately they do not have the capacity first thing in the morning to spend the additional time here to do it. I suppose it’s not fair to say they won’t give me a shower, as they can do it but not until 11am in the morning, but due to my spasms it is too painful for me to stay in bed that long. Thankfully my PA situation has been resolved and my lovely PA who used to work for my old care company has now gone self employed and Hampshire County Council have agreed to put me on direct payments so I can employ her directly so at least my hair gets washed once a week using an inflatable contraption which we put  on the bed.

I think I’m getting to the stage though that I need to see now that my medication has been increased again for my spasms to see if I can cope with staying in bed until 11am. It’s also fair to say that my PA has offered to do my shower with hubby, again though I have dug my heels in and I know my PA understands but I want to keep our relationship different to that of me and my domiciliary carers plus I don’t want to get dressed by my carers, hoisted out of bed and into my wheelchair and then have to do it all again a few hours later.

I am acutely aware that there are an increasing number of friends and family that are furious that I am not getting my shower and I do understand but I also think at the same time that part of the reason I’m not is because I will only accept a shower first thing in the morning.

There is no getting away from it, all the issues around capacity and a lack of carers is born from the last ten years of underfunding in our Adult/Disabled Social Care. Although SMD also says “it is not only in adult care but children’s service’s in general especially mental health. A complete overhaul of social care and the NHS is needed otherwise we will end up losing it.

So in conclusion just be aware that if anybody is about to seek care for a loved one, the system is broken and by no means perfect. It is the service user that is having to compromise. Now is the time to lobby MPs about the state of social care. I am one of the lucky ones I even have a permanent social worker, believe it or not that is a rarity in the current climate. Not at all surprising they are completely underfunded, their workload is unprecedented and they are leaving in droves hence the reason we are hearing about so many tragedies. Maybe it is time to stop worrying about shipping immigrants to Rwanda and concentrate on paying our carers and NHS staff a decent wage rather than giving them a metal badge after Covid with the word carer on.