This article was written for Annabel & Grace, which is now part of Rest Less.
I am now going to relate my simple experience of dealing with Adult Social Care within my County Council which I am sure is reflected throughout the UK.
My mother was diagnosed with Alzheimer’s and could not live on her own as she was a danger to herself. Live-in health care was needed but was extremely expensive as it needed to be 24/7. During a period of extreme illness, which transpired to be the result of undiagnosed bowel cancer, her GP found her a bed in a local private nursing home (there were no state nursing home beds available) so that I could go on holiday and recuperate from a gruelling month of looking after her and to give me time to reassess, with the GP, my mother’s care needs. During this time in the nursing home she fell and broke her hip which could only be repaired with a pin and so her mobility was severely curtailed. It was realised then that she could no longer live on her own especially as her mental health had deteriorated whilst in hospital, probably due in the main part to the anaesthetic.
She returned to her nursing home and we then applied for and, after a few months, received a contribution to her nursing home costs from Adult Social Care. No-one explained that whilst I was receiving payments from this department they were nothing to do with my mother’s health care and that was dealt with by a different department within the County Council. The Social Care department then sent a trainee to assess my mother for these payments, 8 months after she had been receiving monthly contributions so sort of after the horse had bolted and the stable door been closed. As this trainee had no access to her health records she asked my mother some completely inane questions e.g. how many children do you have? Bearing in mind she had Alzheimer’s she could not answer many of the questions but the trainee seemed to be unaware of what an Alzheimer’s patient could or could not do. She just ploughed on with the questions from her pre-assigned list. Yes the questions were about her social needs e.g. was she happy in the home? Were the staff kind? Was the food good? My mother was a very polite lady who would never complain and so said yes to everything even though she could not tell the assessor what she had had for breakfast that day. This social assessment was never shared with the health department and yet so much of it could have helped them in their separate assessment of my mother.
We have since had some heated meetings with the Social Care team as their feeling is that, following the above assessment by the trainee social worker, my mother did not need all the contributions she was getting and so they want us to give back some of the money. It took them 4 months to write up the assessment and make this decision so by this time we had received 12 months of contributions. When I pointed out that she had Alzheimer’s, bowel cancer, a pinned hip following the fall and in the last few weeks an abscess that had burst and caused insufferable pain and anguish so what more did she have to suffer to qualify for these contributions? They told me that these were health issues and I should have applied for ongoing health care contributions ie a different department? How was I meant to know this? Do you think Social Care were a bit short of money so they thought my mother could be paid for by the Health Care department?
Anyway the nursing home put in the application to the Health care department in the Spring of 2015 and we got no response even though we continually chased them. They eventually took up the case and kept sending us letters saying they would get round to my mother’s case.
But all was not lost as last week I got a telephone call which began, “Hello I am xxx from the Continuing Health Care team, and I am calling you to arrange to review your mother’s ongoing healthcare needs.” I responded, “Well she has been dead for over 2 years and I am not sure she needs much health care where she is now.”
xxx did apologise saying, “Sorry I did know she had died (could have put it a little more sensitively I thought), but I must explain that we are dealing with a backlog of cases and are only just getting around to your mother.”
So does this illustrate that there is a problem with social services?
To continue my story: Continuing Health Care, can contribute to the nursing home fees that we have paid out and now that we have returned the money to Social care we are definitely out of pocket. Luckily my mother had a family that could afford to loan to her the nursing home fees and wait, over 2 years, for any reimbursement. This was due, in the main part, to the fact that there are four of us and so the cost was spread between us. However if this had not been the case and my mother had been totally dependent on all Council contributions to pay the nursing home fees where would she have been?
On top of this they are now only able to assess my mother’s needs through her health records i.e. due to the lateness of opening this case they do not have a patient to meet with. Also all of her health issues during her final weeks meant that she had to be kept in a bacteria-free environment. All of this was extremely testing for the trained nurses in her nursing home so I am not sure why she would not have qualified for ongoing health care. She was even too ill to be transferred to a hospice. So where was she to go if her nursing home fees could not be paid.
However I am expected to meet with this lady to discuss whether my mother did indeed qualify. This would seem to me a waste of both her and my time. Surely the assessment, now that my mother is dead, has to be done with just the paperwork. Not ideal I agree but in the circumstances we should now not waste any more taxpayer’s money. The assessment could be done via phone or email. Skype is a modern addition to communicating and saves a lot of time too. Could most of these interviews with the family not be done this latter way? I happen to live within an hour of the meeting place but I would guess many family members of other patients have to drive some distance.
I am completely baffled by the complete incompetence of both departments. If I was the elderly spouse of a patient I would have found this all very distressing i.e. the endless meetings to discuss my dead loved one. I am not feeling good about it however I am going to go to the meeting later this week as I am fascinated to know why we have to meet at all and to see if there is any chance that there is someone in this black hole of inefficiency who can finally put my mother’s case to rest.
P.S. I have been sent all of the notes written daily by the nursing home in order for me to read them before the meeting. One day’s entry showed that my mother was found in a skip in the car park. When asked what she was doing there she replied that she was fine and was waiting for her family to visit. I was never told about this incident which at the time would have upset me so much. Now that time has passed I can read it and laugh a little and think thank goodness she was not waiting for Adult Health Care to come as she would still be there!