“I would say I was existing. I was clean, I was fed, I was put to bed….so, just fed and watered. I didn’t feel like a complete human being….I didn’t feel complete.”
This was how Ken felt after Derby City Council dramatically cut his care package in November 2013.
Ken first felt the symptoms of Multiple Sclerosis (MS) when he was 17, in 1985, when life had so much to offer and his career in Rolls-Royce was still a future aspiration. Despite these early signs it was a few years before it became confirmed and the full effects started to take grip. In 2000, working at Rolls-Royce became impossible, and he left to concentrate on managing his health, and creating a life with MS. After a 3 month stay in hospital in 2010/11 he was given a daily care package to help him with routine activities but which also allowed him to pursue his passion for sailing both as a volunteer, and a competitive participant.
Sailing was Ken’s life, it made him feel whole, it allowed him to help people, and, in the boat, his disability disappeared. He fought with his able-bodied peers on the same terms ; the wind did not discriminate. He was active in the Swarkestone Sailing club, and was instrumental in the development of Sailability ( volunteer led group that helps disabled people to sail).
In November 2013, the bomb dropped. Derby City Council reviewed his package, and told him his hours would be cut. He was advised by the care agency that there was no point challenging it – he wouldn’t get anywhere! It was like the prison doors being shut behind him, his home had become a cell. Outside of the basic personal support, he had a few hours a week for “social” time which was supposed to cover everything outside of the house. His world fell apart. On his own, no family, no prospect of a future!
To get to Swarkestone, safely, he needed a carer to get in and out of the car, and to attend to his personal needs during the day. Ken’s desire to go sailing meant that he would drive there on his own, at massive risk to himself, and draw on people’s goodwill to help him out of the car, into the boat – and for personal matters, that was extremely awkward.
“Once every two weeks I had a few hours just to go out. I felt house-bound, and the carer would come for a half an hour call – it was so rushed. We didn’t have time to chat, and I didn’t speak to anyone else. I just felt…..hopeless.”
Although he is proud of his house, his perspective on it was changing
“It doesn’t matter how comfortable it is…it’s still a prison, as you can’t get out – it was my cell”
After writing about the Independent Living Fund [ILF] ( Ken was not on ILF) and the benefits of the new Care Act, I made contact with Ken in July 2015 to understand his position. In the midst of our chat I was intensely moved by Ken’s situation, and the thought of him spending his days, sat in his wheelchair, staring at the TV, or computer screen, with little social interaction, and taking great personal risks to remain involved in his one personal passion stirred my emotions. I explained to him about the Care Act, and my impression of how he should be able to benefit from it. In the absence of any experience on this subject, I offered to work with him and, go on a “bumpy journey”, to secure an improvement to his care package so he could get some control back in his life, improve his health and, most importantly, re-invigorate his personal “well-being” – the core principle of the Care Act.
The signs were not good. Adult Social Care funding was being cut, the care agency said there was no chance of success.
Within a few weeks we had the first meeting with the Social Worker who reinforced the gloomy prospects. Unwittingly, the person from Derby City Council, had reinforced the negative expectation in the first 5 minutes – any hope that Ken had, had been smashed! I refused to accept that. I questioned why they were raising such issues with Ken ( although Ken is a bright and robust man, he is in a vulnerable position, and for many in this situation, prone to understandable anxiety). I maintained that their job was to follow the assessment process and allow the various reviews to decide the outcome, and not to pre-judge it. My view was that this was unprofessional, and unethical – I told them this.
We completed the assessment form, ourselves, outside of the meeting, decided very clearly the outcomes that Ken wanted, and calculated how much that would cost ; I wanted to know what “success” would like for Ken. We did this in about a week, and the form was submitted. This “success budget” was about 50% greater than Ken’s current package – a challenging request, but totally justifiable.
The next meeting with the Social Worker was prefixed with the same pessimism about the chances of getting additional funding, Ken was despondent, I had the same conversation again! We went through the assessment, expanded on the detail, and enlivened the text that we had written. It was self-evident that Ken’s budget was just too low, and the social worker could see that. Despite this, she cautioned that when they processed the assessment “in the computer” the Indicative Personal Budget (IPB) would probably come out lower – I questioned how that could be, and that it might be useful to check the detail before she came back with starkly bad news.
In a few weeks, she came back with “starkly bad news”, the IPB was cut by 40%. This would have meant that Ken would not have had enough care to support basic functions on a daily basis with zero opportunity for social interaction, leading to deteriorating physical and mental health. His 15 minute packaged meals were already creating digestion problems, his inactivity was making him weak, and his isolation making him depressed. This would have been a life sentence.
We went to appeal. With advice from the social worker, we compiled some additional documentation ( non-standard) which presented his case more thoroughly and waited for the review. After many weeks the message was fed back that they were prepared to increase his existing package by a few hours ( approx. 10%). This was some crumb but simply not enough. We carried on.
NHS funding was also pursued, with the support of the DCC social worker, and a meeting was held in Ken’s house to discuss Continuing Health Care support. After a few hours of detailed, but relevant, questioning ( done very sensitively by the CHC Nurse) , on every corner of Ken’s life and condition, it was agreed that support would be provided by the NHS. The next stage was to be a senior Social Care / NHS conference, that would agree the percentage split. I asked – percentage split of what? There was only one number that was relevant as far as we were concerned and that was the “success budget” that we had calculated right at the beginning. I gave everyone copies of our budgets, and left it to them to decide the split between the 2 organisations. Privately I was sceptical as the case was referred to a faceless review.
The message came back just before Christmas, that Social Care and NHS had agreed to split the budget, and that it would be for the full amount of the “success budget”…to the last pound! The call to Ken was another emotional moment.
And now Ken can have proper meals, he has time to go to the gym, swimming and other exercises recommended by his Doctor, as well as the time to pursue his passion for sailing, and become part of society again. In Ken’s words:
“I feel….born again. Before I would look at things that were happening and it wouldn’t enter my head about going, as there was no option, and now I’m starting to see opportunities to access things. It almost feels unreal. I do feel that I’ve got a life and I’m living. My health’s improving, which is giving me the ability to do the things, with help, that I want which, if you’d suggested last year I would be doing, I’d have laughed at you.”
“What the Care Package gives me is a key. I don’t see my home now as a cell. If I hadn’t got this key, then it would still be a prison”
“Now I have control over my life – it is a lot about control. The flexibility makes me feel really really good.”
“I can’t think of anyone who’s disabled, who spends time on their own, and there must be thousands of them, who wouldn’t really appreciate a little bit of money in the bank that gives them the ability to ring someone if something goes wrong”
In the interest of brevity and confidentiality I’ve missed out much detail. Although the outcome was successful, the process was unnecessarily painful . There are many ways in which Derby City Council could improve the way that they communicate with people who are in a constant state of anxiety on this subject. Some of their approaches were very cumbersome and lacked sensitivity and thought. Had Ken not had independent dispassionate support, he would not have achieved what he was entitled to – that is a reflection on the way that Adult Social Care operates.
Implementing improvements does not need consultants or vast expenditure or re-organisations it just requires people to think before they speak, take care before they write, be prompt in responding, and be empathetic to the person whose care they are providing. I would argue that these improvements, actually, would save them time and money, and reduce service user anxiety.
Ken is not special. He’s just a humble guy living on his own in a small bungalow in Chaddesden. He didn’t want favoured treatment – and he didn’t get it. He just wants the best for himself, and to encourage others to do the same. His world has changed – and his hope is that people read this, feel inspired, and seize back control of their lives.
If anyone would like to discuss any specifics of their case, confidentially, then please email me through the contacts link.