Experts by experience make their mark

One of the key features of CQC’s themed review of learning disability services has been the involvement in the inspections of experts by experience– people with personal experience of these services as service users or family carers.

Putting service users at ease

Laura D Broughton and John Woodhouse have been involved in 26 of those inspections, with Laura taking part in seven and John 19.

Both had been recruited as experts by experience for CQC through a consortium of smaller and user-led organisations led by Choice Support. Laura said: “It was an eye opener for me to see other services and different structures. I hadn’t been employed before so this was a good opening for me and confidence building. I hadn’t been around people before who have ideas of disability but treat you as an equal.

John said: “It was a great opportunity to help user voices to be heard and an opportunity to speak to them myself when they might not have been comfortable speaking to others. In one place someone did speak to me one-to-one and the staff were astonished.”

Experts by experience had two days of training, but even so, there was still an element of stepping into the unknown. Laura and John have both used learning disability services, but neither had lived in residential care. As John put it: “I had a good idea from the work I do with VoiceAbility but didn’t know what to expect from each service – and things varied from service to service.”

He also found that the best method for him was to not always stick rigidly to the questions on the forms: “As I did inspections I learned to ask questions in different ways.”

Laura said she sometimes found it difficult to see why people were sectioned.  “Having not had the experience of being in that situation myself was good – I could objectify it. But it was initially shocking. I learned to distance myself. I was shocked at the start, but it got better as it went on.

She said that most staff were OK, but some were a bit shocked at the idea of being questioned on their job as a carer or support worker by her and the language of one member of staff disturbed her when they said that to communicate with some patients staff have to ‘[try different things, like you do with a baby’. 

“The idea that just because someone is non-verbal that they should be referenced like that was too much. We are all grown-ups and we have our difficulties but we have a right to be treated as grown-ups. Being referred to as a baby is too much.”

Both felt that they did notice things that might not have been seen by inspectors. For example, Laura said, one place had handrails on the stairs but only on one side. Because I have a weakness in my right side I would have needed rails on both sides.”

John said he found information was there, such as a safeguarding phone number or an advocate service, but [service users] were not always aware of it. One concern John reported to the inspection team manager regarded safeguarding. He spoke to one service user who was happy but not sure how to complain if they needed to. “Sometimes people might not feel safe and not know what to do.”

Both agree that service users probably felt more at ease talking to them. Woodhouse says, “In one place a service user started talking to me and the staff were astonished because they didn’t think he would talk to anyone. He wasn’t that happy with staff which may have been why he was more comfortable talking to me.”

John said he learned about services from doing these inspections. “I went in with an open mind, willing to listen and not judge. I was able to approach questions in different ways, or in some cases put the questions to one side and chat. I felt like an equal part of the team and I think inspectors appreciated the contribution we made”.

Unique insight provided by family carers

Julie Thorpe and Ted Goodman were recruited by the Challenging Behaviour Foundation (CBF) as family carer experts by experience to take part in CQC’s inspection programme of learning disability services. Audrey Giles from CBF, a family carer herself, also took part in inspections.

Family carers brought a unique insight to the inspections. CBF set out strict criteria for recruitment, wanting to ensure people not only brought the experience of how they managed their own relative’s support, but could work as part of team and had a real desire to change things for the better.

The carers had two days of training to prepare them for the inspections. The first was provided by CQC; the second, delivered by the CBF was also part of the recruitment process and included training in positive behaviour support, personalisation, use of physical and medical intervention, the importance of including family carers and working in partnership.  This ensured that all experts by experience had a good understanding of what good support should look like.

All three agreed that the meaning of ‘choice’ was an important issue –choice is a vital ingredient of person-centred care. They acknowledged that it is difficult when people are perceived as not having the capacity to make choices, but there must be a balance. For example, can people help themselves to snacks? Who gets to change the channel on the tv?

As well as visiting the services being inspected, family carers contacted relatives of the people using the services to get their views. Julie said there were times when this led to “a cathartic outpouring for family carers who hadn’t been able to talk to people before”.

She felt the empathy and understanding of people who had experienced this type of care was vital: “it gives you the language and the understanding” to connect with other family carers. Ted agreed that families welcomed the principle of using experts-by-experience.

She said that she found some family carers express sadness and anger about the treatment their relatives had in previous placements. People had not complained because they feared making a fuss would have a negative impact.

A lot of carers were concerned about confidentiality and there was a fear of reprisals and sadness about previous places that were much worse than current placements. For relatives, the most important thing was that their family member was safe.

Julie said that carers tended to open up as the conversations progressed, with the issues for concern usually disclosed near the end of the conversation after a rapport and trust had been established.

She also commented that it was hard for carers to know what a good service looks like – carers talked about their relief that the place the person was in was much better than the terrible place they used to live in, even when they had some concerns about the current placement.

Ted talked about “the privilege of being talked to and having people opening up and sharing their lives with me. It was humbling. The sheer commitment from families was astonishing.”

Ted and Julie both commented on some of the contradictions that can make judgements about services difficult. For example, although by their nature assessment and treatment services are not meant to be long-term placements, some families don’t want their relative to have to move from somewhere they are settled to supported living, where they fear lack of support.

The attitude of staff was all-important. Julie says in some places there were “disinterested staff who don’t really like the people they are working with”, while in other she saw “wonderful staff who really care and have an empathy and a positive attitude”. Ted and Julie both felt that good will, caring and empathy were the most important staff attributes, more important than “the list of qualifications”.

Julie also thought that society needs to raise the status of the job – and recognise that people need to earn a living. She commented that many services charge extremely high fees for placements, but she didn’t see evidence of the money filtering down to the people using the service or the staff.

Julie and Ted both felt they added an important ingredient to the inspections. As Julie said: “I can’t say inspectors wouldn’t have understood so well but I feel that caring and having someone else care for someone you love is a very emotive and challenging issue for a lot of people, whether the person they love lives with them or not.  We live it and know it and I think this may shine through the conversation.

“I think I added a fresh pair of sharp eyes from a prospective customer point of view – a critical friend to the inspection team.”

Ted said he was impressed with some of the care he witnessed. For example, staff sourced a virtually indestructible lap top computer for one service user who, while he benefited from listening to music on a computer or mp3 player, his behaviour led to him destroying such equipment. He’s now learning other activities on the computer. Another service had encouraged a service user’s artistic talents, to the point at which they had been exhibited locally and on the internet through their own blog.

Both family carers said they had benefited from taking part in the inspections. Ted valued the opportunity to meet other family carers and tap into new networks offering mutual support. He also said his involvement helped him update his own knowledge of current trends in services.

Julie said the experience had given her a greater understanding of the range of facilities and approaches, knowledge of specific outcomes expected and a knowledge of what a good home looks like – which may not be the same as a compliant home. Julie and Ted said they had excellent support from CQC and CBF and felt included as a useful part of the team.

A easy read version of this article can be provided on demand.