Personalisation is a very broad brush term to describe the so-called ‘transformation’ agenda in adult social care. In very general terms it refers to the process of moving from resource-led to needs-led systems of service provision (just as the NHS and Community Care Act 1990 was supposed to do) but this time… with individual budgets.
The idea is one is it difficult to find fault with. Users and carers would have more control in choosing the type of care which was provided through having ‘pots of money’ either virtual or actual payments and deciding how best they could be used.
The change was led, ironically, by the soon to be extinct ILF (Independent Living Fund) which was the forerunner of the Direct Payment system whereby money was put directly into the hands of service users to choose and buy their own support and hire their own carers (with substantial support regarding admin and regulation if necessary). It was a new way of doing things and it generally worked very well.
Then with the ‘Putting People First’ white paper, the idea was to be rolled out to everyone receiving a package of care from the local authority. Wonderful. We would be living in a world where patronising social workers wouldn’t be dictating that ‘they knew best’ and imposing care packages based on large scale contracts negotiated down to reduce the costs and people would be able to choose the services they wanted and the carers they needed and liked. It would all end happily ever after.
I was a great campaigner for direct payments. I saw a lot of people do extremely well from them. I also think a lot more needed to be done though in increasing the take up and levelling the parity of service provision.
It appeared to me that those best able to advocate for themselves or who had active and involved families got the lions’ share of the services and were able to cherry pick whereas those who weren’t able to access the best systems either though lacking mental capacity, through lacking the desire or just being so knocked out by disability/age or lack of family got the scraps left behind by the system. The contracts that had been negotiated by commissioners who never themselves would actually use the services of minimum wage carers who were overworked by the care agencies determined to slash costs in order to win these prized contracts.
Soon though, the announcement came that everyone would get ‘personal budgets’ for social care. Wonderful. That would level the playing field, surely.
It was quite exciting. For a time. Until we realised that the people the local authority were ‘piloting’ the system with where exactly the people that they knew the system would work with – namely those who had successful direct payments packages.
Now, in my time, and the only time I’ve done properly authorised and supervised research as a practitioner, so happened to be related to direct payments. I spent a few months researching the lack of take up of direct payments by older adults and adults with mental health needs.
Now, my research was primarily literature-based. I did no direct interviews (ethics committees take time!). There was substantial sources of literature available, even at that point.
So what was learnt from the research that had taken place at that time and how was this used to improve the service provision when personal budgets were rolled out?
It wasn’t. So we find ourselves in the same place years later.
That’s a very long background to my point this morning but I think it’s important to emphasise the context through which I read the SCIE report ‘Keeping Personal Budgets Personal : Learning from the experiences of older people, people with mental health problems and their carers’.
I read this report last week and as is the case in all the best research, it backed up, with evidence my own feelings and ‘hunches’. I like research that does that.
The main learning from the report is that the key to the implementation of a successful personal budget is both information and involvement of a professional. People wanted support with completing self-assessment questionnaires in general so while our local authority employers promised us (don’t worry, we never believed them for a second) that time saved in leaving people to complete their own self-assessment questionnaires is time we could use in ‘creative support planning’ actually, the SAQ can be a daunting document.
In my experience, it is extremely poorly drafted (possibly because the focus groups were very narrow) and I am almost embarrassed to give it out. It focussed heavily on physical care needs and asked particularly strangely worded questions about capacity which shows the author of the forms have no understanding of the Mental Capacity Act and the idea of ‘decision-specific capacity’. It reminds me (and service users I’ve taken it to) of a DLA form. Jumping through hoops and ticking boxes to get money is not dignified.
The SCIE research also emphasises the importance of having a consistent person available to take a user through the process. Again, less necessary when there is a someone who is high functioning or who has highly involvement family/carers but the resource distribution of support doesn’t create an equity for those who need more. Professional time is increasingly stretched and the time spent rushing through a SAQ and package of support is not respecting the principle of self-directed support. As professionals with heavy caseloads though and targets which are tracked and time-limited, it is hard to balance this ethically.
Moving onto the Resource Allocation Systems (RAS) which is the way that the self-assessment ‘turns into’ a sum of money – either real or virtual for the user to ‘spend onservices’. I can’t express my anger about the RAS system strongly enough. It is heavily biased against older adults. It is even more heavily biased against people who have carer support. I don;t know how widely this information is known but if you have a family member providing support, you suffer massively when the finances are pumped out of the ‘RAS system’. The more help the family member provides, the less money comes out. I feel this is immoral and short-sighted. It places additional stress on unpaid carers and pays no heed to preventative care. Yes, individual cases can be argued but that takes more time and effort.
The we move to the support planning stage. You have the ‘virtual budget’ in hand so what amazingly creative package of care can you create. Again, the evidence in the report shows that it is often information that is shared by the professional in the first place that leads to the quality of support planning. Users wanted continuity of staff throughout the whole process of assessing and support planning so our local authorities great idea of commissioning organisations to help might miss this point – although that idea and those commissions fell through when the organisations they had commissioned were so overwhelmed with referrals they were unable to take on any more users. Oh, and the user groups that were commissioned? Physical and learning disabilities charities. Nothing for mental health or older adults. Surprise. Even though those were the groups least likely to get the support and planning needed.
There is so much in this report and it is worth reading if you are involved in any way in implementing personalisation in adult social care in the UK.
The sadly predictable thing is that I could have told the councils these messages 5 years ago but noone would have listened – come to think of it, I DID tell the implementation team 5 years ago and many times in between. They are so vested in this new system of delivery of services being ‘better’ that they are blinded to the vast swathes of people who are again increasingly sidelined and excluded from the positive thrust of the personalisation agenda.
Sadly, it feels like the lessons will never be learnt because the wrong people are being asked. No-one wants or is able to invest real money in providing better services and more flexible and easier ways of managing the service provision in the less engaging client groups.
It’s unfortunate that the agenda has sprung into life at a time when cuts are at the front of our communal minds. It has become too easy to see personal budgets and cuts in the same sentence when they were never meant to be.
The truth is that the whole system is failing those who need the support, advocacy and choice the most. You know, those elderly people with dementia who have care staff on minimum wage coming for 30 mins in the morning to give them a shower. There are lots and lots of them around.
I want to ask how is the personalisation agenda helping THEM? How is it helping us to help them? We are closing day centres because people can ‘group together and commission day services jointly’ but sometimes the purpose of a day centre is the company that you surround yourself with, the support of peers and not about completing a specific task or learning a specific skill.
More able, more active older adults may well use their ‘day services’ budget to go to the local bridge club or swimming pool – but how about those with advancing dementia whose carers need the respite that day services bring as much as the company and hot meal are welcomed by users. Are the local swimming pools and adult education colleges going to be suitable for all?
The idea of personalisation was the it would be something that would be actively chosen and engaged with and there is no doubt, it works very well for those who are actively interested and engage with their care services.
My concern is that the process has, again, run away with itself and left behind, far behind, those who cannot make decisions for themselves about their own needs and who don’t have family to advocate for them. They are left with the same ‘old style’ service delivery model of the cheapest agencies providing poor quality care by rushed carers on minimum wage. The difference is now the day centres are closing and the government are telling us this system works better.
The sad thing is, if they had read and understood the research that was available at the time regarding the take up of direct payments by adults with mental health problems and older adults, they would have learnt all these lessons and maybe put better systems in place. The cynic in me says they only wanted to see success and the same groups of service users suffer yet again.
One of the things that saddens me the most on a personal level, is that I was always a great advocate of the direct payment system. I plugged away with it and got some incredible results with specific service users. I was the little pet of the direct payments team, explaining again and again to my colleagues who wonderful it was to be able to reliquish control and allow and promote user choice.
I wanted and was sure the system of personal budgets would be even better. It would be more inclusive. It would fix the faults of the direct payments system because, look, we had research to back up why it hadn’t worked so well with these particular service groups (older adults and people with mental health problems).
All the research was ignored. Mistakes were replicated and exacerbated. If anything it is even more exclusive and inequitable than the previous system and no-one seems interested in listening to any of the real concerns and criticisms.
A great opportunity has been missed. Hopefully someone somewhere will actually read the SCIE research paper and think about making real changes in the systems of delivery and implementation. It could all have been done in advance though and that’s the true tragedy of the personalisation agenda.
- Respite, Disability and Personal Budgets. (fightingmonsters.wordpress.com)