Focus on advocacy

Focus on advocacy: the Kingswood Centre.

Here at Yarrow we are passionate about helping to make sure that people with learning disabilities and complex needs are given as much control as possible over their own lives. Over the last 30 years things have been changing for the better, with a move away from long-stay hospital care into community-based living. However, at times of crisis people may still require inpatient care owing to a serious breakdown in their usual living arrangements.

The Kingswood Centre in Brent, London, specialises in assessing and treating people with learning disabilities who have mental health issues or exhibit behaviours of concern which are difficult to manage in a community setting.

The Centre is run by the local NHS Trust and has three inpatient units, housing up to 24 people who have been placed under a Mental Health section. A multi-disciplinary team of clinical professionals including nurses, psychologists, psychiatrists and a language therapist supports the inpatients to prepare them for a move back into the community.

We’d like to focus here on another important member of this team: the independent advocate. The advocate gives a voice to those who find it hard to speak up for themselves and helps them to understand their situation. It is a unique position because, unlike the rest of the team, the advocate is not employed by either the NHS trust or the social services team.

The right to an advocate

Under the Care Act 2014, every person that has substantial difficulty in being involved in decisions made about them and who does not have an appropriate individual to support them must have an independent advocate. This is just as important in inpatient settings where patients have been placed under section and have already had many of their choices and freedoms removed. Unfortunately, at present advocacy is not well-funded and it can be hard to access support. The independent advocate role at the Kingswood Centre is unique as it was developed in partnership between the NHS Trust and Yarrow. The Trust approached Yarrow in 2008 to see if we could help to find an advocate.

We were able to suggest a candidate: Kenneth Conway who was working with Yarrow at the time as a residential support worker, having a background in psychology and communication. Kenneth had developed strong skills in dealing with challenging situations owing to his work in one of Yarrow’s services for people with Autism. He was interested in advocacy and the importance of communication and was a good fit for the advocate role.

How the role developed

A photo of Kenneth Conway, Independent Advocate
Kenneth Conway, Independent Advocate

Initially Kenneth was commissioned to the independent advocacy role for 10 hours per week looking after 14 inpatients. Over the last 10 years the advocacy role has developed significantly, and Kenneth is now based at the Centre for four days per week, supporting 16 service users. Yarrow’s involvement in the role is to continue to provide Kingswood with this service and Kenneth works with the autonomy the role requires.

When Kenneth first began the role, there was no framework for advocacy in place at the Centre, and no intermediary working with the service users to help them express themselves. Kenneth remembers that there were lots of people talking forthe service user, with their best interests at heart, but that the individual’s voice could often get lost.

His immediate goal was to involve people as much as possible in a collaborative style with their circle of support. This circle can include, but is not limited to, the social worker, psychiatrist, physiotherapist, occupational therapist, psychologist, family members, commissioners, friends and so on. Kenneth’s role is to work with everyone in this group, to make sure that the service user understands everything that is happening and has a chance to express how they feel about it. Being independent of both the NHS trust and social services is really important and allows Kenneth to act for the service user first and foremost.

Kenneth’s manager at the Kingswood Centre, Jo Carroll, Services Director, says, “Kenneth is really helpful in getting service users to be involved, and he works with the family to get their thoughts across too. His view is valuable as he is not a clinician.”

How Kenneth works with the service user and the team

Kenneth works with the service users from the moment they arrive at the unit to the moment they are discharged. This means that he gets to know the client group very well. Coming into an environment like Kingswood can be disorientating, confusing and overwhelming for many people, especially those who have only lived with family up to this point. This can exacerbate difficult behaviour. Kenneth will work with them to help them understand that they are safe, and what life will be like at Kingswood.

The number of decisions they can make are, to begin with, limited, but Kenneth will work with them to understand if they are unhappy and, where possible, find a solution that works for the individual.

He does this in a number of different ways, depending on the individual, how they prefer to communicate and how much they want to be involved.

For example, in addition to one-on-one sessions with each service user, he runs regular meetings with groups from the units. The weekly ‘Speak Up’ workshops usually include around 10 service users and eight members of staff. There is no agenda, they can discuss anything they want, and they take it in turns to chair the meetings. Kenneth then shares the minutes in an Easy Read format.

Kenneth also arranges quarterly feedback from the service users by giving them an Easy Read document to fill in. This could include questions ranging from “Do you understand why you are here?” to “Do you like the food?” and “Do you like the staff?”.

He has been instrumental in developing the multimedia use at the Centre, and in creating Easy Read documents on areas such as safeguarding, medication and bullying to help give service users more choice and control.

Kenneth’s other responsibilities include organising services user and carer events, such as the summer carnival and barbecue, and attending external events to talk about life with learning disabilities and encourage understanding and awareness.

A “pivotal role”

Last year, Kingswood achieved an ‘Outstanding’ rating on their CQC inspection for the first time. The advocacy role was singled out for praise:

“The advocate had a pivotal role in the service in supporting patients to have a voice and express their views and concerns. The advocate was involved in all decisions about patients’ care and was seen as a source of assistance for the multi-disciplinary team. The advocate’s role, and their feedback, was highly valued by the full range of staff, including senior staff. Patients spoke highly about the support the advocate provided them.”

You can read the full report here: Central and North West London NHS Foundation Trust Wards for people with learning disabilities or autism Quality Report, CQC

Kenneth’s role at the Kingswood Centre shows how independent advocacy can create real improvements in the lives of service users and help to achieve better outcomes for them. We think that’s something to proud of. Well done to all of the team at the Kingswood Centre.


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