Dementia Torment
Hats off to Andy Burnham for his speech on social care today. Since returning from an 18 day trip (more in another post) I have been very much banging my head against the wall with the authorities within a system that isn't so much broken or unfit for purpose as barely functioning or perhaps even extinct.
When you have dementia and are blind, you can genuinely believe that not only are you completely rational and can cope, but that you can also see. It's a time bomb ticking towards an explosion and when it does there's an inevitable crisis. At least I've learned a new word: anosognosia. Moreover, I've had plenty of time to practise saying it whilst I've been holding on the phone line for hours in total trying to speak to someone who can assist.
In the midst of a safeguarding dilemma, you do not expect everyone to keep referring you to the Duty Officer in the Department of Social Care, the emergency telephone number for which only ever results in an answerphone telling you that the department is too busy to take your call, but if you leave a message someone will ring back within 24 hours.
With the assistance of the Doctor's Surgery I finally got a number that enabled me to speak to a real person but even she merely noted the details and promised that someone would ring me after 10am the following day. They didn't; it was 4 days later!
Then, imagine my surprise to be told that our file had been closed without us being informed and regardless of the fact that there were no statutory grounds for doing so. I despair!
At least, having resolved the immediate emergency so far as possible ourselves, I was assured that a Social Worker would be appointed and visit within 3 weeks to undertake the action required to avoid a similar recurrence and I would receive an e-mail confirming the position. The e-mail duly arrived indicating that the visit may be up to 6 weeks away and suggesting a variety of steps that I could take in the interim. We had of course already undertaken them over a year ago!
Talk about being stressed; my cortisol levels have been through the roof and even Chat GPT, after analysing my Fitbit data, has been offering sympathy and recommending I get myself a doctor's appointment! Fortunately, today events took a turn for the better when a social worker rang and arranged to visit on what will be exactly 3 weeks after my initial emergency call. Thank goodness for a crisis, otherwise how long would the wait be?
The Prime Minister has promised that the Casey Report reviewing adult social care in England will now be completed next year and hopefully action might be taken to create a working structure. Baroness Casey has already said that the UK is facing a "moment of reckoning" and that the experiences of people trying to access the system are "horrendous." Clearly any changes will be too late to resolve the issues we are currently encountering, but maybe I shouldn't give up all hope for my own future.
Image by Ljubica Miletić from Pixabay
Comments
After four years my anger has not subsided and my respect for the doctors and nurses that gave him the cursory care that brought about his demise has not improved. I am still so angry but need somehow to let it go.
Good on you, Andy Burnham for not only acknowledging that the system is broken but also sounding like you actually care about it, not like the previous bunch of toe rags.