By Anna Severwright
Recently I had a very frustrating experience with my local authority (LA). Although, now resolved I think it highlights some things that need to change to enable personalisation and trying new things in social care. Here is what happened and what needs to happen.
I have had a direct payment (DP), which I use to employ PAs, since 2013. A few months ago my LA decided to hugely increase the level of scrutiny of how I use my DP. Having never had a problem with my DP, I challenged this change and was repeatedly told ‘it’s the policy’. Sadly all my efforts to discuss it were blocked and my letter not properly responded to, so I had to ask for a meeting.
I had a meeting with 3 members of staff including the head of service. After 10 minutes they actually listened for the first time to the issue and suggested a solution (to return to the system that had worked for the past 5 years) and said the magic words ‘we can take it on a case by case basis’. So I am back to the previous system. I wasn’t asking for a radical new way to use my DP (In my area you can only use it in a very narrow way, following tons of rules) but why shouldn’t we try radical things?
And what needs to change to allow more flexible, personalised care?
- People need to be listened to – At every step when I tried to explain why this seemed unfair and disproportionate and request open dialogue I was shut down. The response seemed to assume as the ‘service user’ I must be wrong. However I was the person in the best position to understand the situation as it’s my life. And we will never find new sustainable ways to provide social care if we don’t listen to people who use social care and who know how it really works. The barriers were well and truly up, blocking me from having useful conversations and it took me threatening to go to the ombudsman for me to finally get heard.
- People must be treated as individuals – Unfortunately it feels like one size fits all. I am not seen as an individual but must fit into their rigid policies. It took going to the head of service before I could be treated on a case by case basis. What people want from their lives will be different every time so therefore all aspects of care and support need to be personal to that person. Services should be shaped around people’s lives, not our lives being shoe-horned into rigid services. Think Local Act Personal have produced guidance on better practice – councils should take a look at this and use it https://www.thinklocalactpersonal.org.uk/search/?keywords=direct+payments
- We must encourage and empower social care professionals to consider different, innovative ways – This currently worries me the most. All I hear from social care as a person using it is about rules and threats. If I don’t do x I will lose my DP. There seems to be no room for creative ideas. I can be flexible as long as it fits their ‘mold’ and rules. How are we going to find creative solutions for the future of social care, if social care professionals are made to be rule keepers not enablers? They need to be given the autonomy to try new ways of working and the confidence to do so. While co-producing with citizens. This can be done – Jenny Pitts gave us a glimpse of this future with practical examples in her blog “Releasing social workers to do what they do best” https://socialcarefuture.blog/2018/03/15/release-social-workers-to-do-what-they-do-best/
- The power needs to shift- I was threatened with removal of my DP which just reinforced for me how the council and its representatives hold all the power. If I lose my DP I will be unable to live alone or get out and contribute to society as I do now. That’s terrifying. Until this relationship changes to a genuine partnership, where I’m seen as an expert in my life, with important knowledge and solutions to offer, we will be stuck in the current structures of social care. As an example, I was heartened to see one council recently undertaking a DP review in partnership with disabled people and based on an analysis by a disabled people’s organisation. This has led to strong recommendations and a commitment to deliver them https://www.lbhf.gov.uk/sites/default/files/section_attachments/ruils-dp-review-main.pdf
On a positive note to end, the care management officer who had carried out my review, asked to see my letter and the points I had raised. She said it had taught her a lot about how they should be working and was going to use it as a learning opportunity at their next team meeting. So there are some who want to be brave and try new ways. Let’s extend this to the whole of the system and culture. Over the past year I have been involved, as co-Chair of the Coalition for Collaborative Care, in helping develop, with Think Local Act Personal, an update of their Making it Real resource https://www.thinklocalactpersonal.org.uk/Browse/mir/ This resource starts from the experience of people using social and health care and helps localities, organisations and professionals to self-assess their systems and practice to shift the power balance and move further towards real personalisation – I’d strongly encourage all councils and their partners to use it.
Anna Severight is co-Chair of the Coalition on Collaborative Care