People doing it for themselves - stories of success in support planning

Martin Walker’s road trip looking for stories of success in support planning takes him to the South West, where he meets someone managing care and support independently.

Do you believe in fate? Sometimes you’re in the right place just at the right time. That was the case when I met Sue at a Skills for Care event in Taunton a few months ago.

The event was designed to support individual employers and personal assistants (PAs), and people who work with them, so a range of people from direct payment support and other related services were present.

I was a little late so I grabbed the nearest vacant seat, trying to be as unobtrusive as possible. As you do at these things, I found out about folk on the table, and met Sue. She was one of the few people in the room who was there as an individual employer.

I was inspired by what I heard and wanted to find out so we met again a few weeks later.

Managing a direct payment - learning on the job

Sue retired some time ago, after working all her life in education, and has lived near Yeovil for many years. Her mother and brother live together in Cornwall. Sue organises their care and support. It’s a pretty complicated situation.

Sue’s brother, Martin, has severe epilepsy with autism and is both learning and physically disabled. He has a range of health issues, the most significant affecting his heart and he often experiences seizures. He sometimes displays behaviour that may appear challenging and has some self-harming issues.

Martin’s had a direct payment for 20 years now. His mother used to manage it for him until about 8 years ago when it became difficult for her. At this point Sue took on management of the direct payment and everything that goes with it.

Sue’s mother is now becoming frail and has her own health issues; she is beginning to need care and support herself.

I was struck by Sue’s capacity and appetite to learn, motivated by wanting good care and support for her mum and brother. Sue says taking on things was a huge learning curve for her; “I picked things up as I went along and learned along the way”.

Sue’s had good support in the past both from a social worker and the direct payment support service on some aspects. She got connected to Skills for Care’s different networks, going along to anything she could to pick up information, tips and connections that might be helpful.  

An integrated care and health system?

It was pretty obvious to me that co-ordinating things between social care and health was an area of frustration for Sue. Martin has both a personal budget and a personal health budget. PAs are employed through their direct payment from the council, but the health service provide carers from an agency.

Co-ordinating the care, including trying to work with the different funders, has been problematic. It’s clear that Martin and mum’s wellbeing are interrelated; something not happening in a planned way for one of them can affect the other’s health and mental state.

Sue has tried to get everyone together to resolve some issues but the different parties were not prepared to meet. In Sue’s view, one professional who stood out was Martin’s consultant, who supported Sue through this difficult time both emotionally and practically.

So what about care and support planning?

As is often the case when I ask people about reviews, Sue told me Martin had not had his care and support reviewed for the last three years. In addition, she told me that his direct payment hadn’t been audited since the transfer of Independent Living funding to the council.

Sue showed me Martin’s ‘care plan’ folder that she had developed. It was a treasure trove of information and insight. ‘It’s a file anybody new could pick up and know exactly what they need to do and how they need to behave to get his care and support right. Most of it was written by Martin and his personal assistants’.

In the file I saw:

  • a one-page profile, detailing what was important to and for Martin
  • schedules of what needed doing and when, which also included some why’s around socialisation, activity and the importance of routines
  • key contacts
  • learning about what’s worked in the past and learning established from what’s not worked
  • how to safely support Martin around his mobility
  • a specific ‘my epilepsy plan’ that came about from discussions with the consultant.

In other words – a full on person-centred plan.    

I can’t stress enough that Sue developed this all herself, driven by her own values and love and concern to get the best for her family, rather than any formal training or knowledge of care planning and its associated jargon. She’d never heard of a one-page profile and was really excited when I showed her some of Helen Sanderson Associates resources that she might like to use in the future.

Values based recruitment

Sue told me how they went about recruiting the right people to support Martin and now her mother. Skills for Care would call it values based recruitment. To Sue, it just seemed the obvious thing to do.

“We advertised for PAs in a local newspaper when Martin’s PA of 13 years moved on. We had about ten applicants that I screened over the telephone. Rodney, Martin’s older brother, and I interviewed the four we shortlisted with Martin. Empathy and compassion were important, and we were looking to see an interest in Martin. The two who were successful asked what Martin liked.

We couldn’t decide between two really good people, so we asked them if they would job share. One had a care background, the other worked in Boots. What they had done wasn’t important, whether they could work with Martin was what mattered.’

Martin now has a team of five personal assistants recruited in this way.

Self-managing teams

When I heard about the way Martin’s team works, it reminded me of the way in which the ethos of Buurtzorg is being explored here in England by a variety of organisations.

“Martin works better with regularity and continuity, so staff do their own rota a month in advance. PAs have a copy, Martin has a copy, and mum’s care agency have a copy.

“He has a mobility vehicle which the PAs drive and mileage goes down on their timesheet. We have a team meeting once every six weeks. Martin comes to part of it to let us know how he thinks things are going. We take it in turns to chair the meeting. One PA takes notes and types them up. One has taken on a bit more responsibility for co-ordination.”

Sue proactively sources funding to get PAs appropriately skilled, which includes food handling and manual handling.

“We won’t have anyone in the house unless they are epilepsy trained.”

What did I learn?

Like other people I have met whilst working in social care over the past 12 years, Sue was able to work this stuff out for herself, driven by love for her family. You don’t need to know what a formal care and support plan is: applying common sense and a degree of persistence can be equally as valid an approach in designing person-centred care and support.

Values are a good place to start and stay rooted in. The health and care system is complicated, but your own values are a good barometer to test out the things you experience when interacting with health and care professionals.

Age should not be a barrier to managing a direct payment, though taking it on can feel daunting at first. Older people, just like anyone else, can successfully develop flexible, responsive, compassionate plans and implement them on a day to day basis. Good support from peers and professionals can help reduce anxieties around this. The challenge for the organisations that make up the ‘system’ is to work in ways that support people working as individual employees and not put unnecessary hurdles in the way.

It was a privilege to meet Sue and I’m so glad I chose that empty seat.


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