Is this right for me?
Report from the regional forums to the TCAB
Good information
In the West Midlands knowledge was still limited amongst self-advocates about Transforming Care. Self-advocates that are involved in their Local Learning Disability Partnership Board or Regional Forum knew about Transforming Care. Doing this work has meant some people have tried to find out more about Transforming Care.
Very few self-advocates knew who was leading the Transforming Care work in their area, or how many people with learning disabilities were in Assessment and Treatment Units. Families knew about Transforming Care but were not aware of what was happening locally, but were keen to know more. In the West Midlands both families and self-advocates felt there was not enough information, especially in easy read.
In the Eastern region some self-advocates were involved
“We have our Champions (self-advocates) on the Partnership Boards and in the Transforming Care workstreams” but some people were not as clear “We are told people with direct experience of Transforming Care and their families are involved in the Transforming Care work but we have no evidence of this”.
Inclusion East and ACE Anglia are working on easy read resources for Care and Treatment Reviews, and from some people there was a sense that “Parents have a strong voice and sit on groups with people, parents are representing people with complex needs and using case studies”.
In the East Midlands self-advocates from 8 of the 9 areas across the region said Transforming Care had been talked about at the Board meetings and people seem to have a better understanding of what this work is:
“It’s about people having better care in the community”
“It’s about winterbourne view not happening again”
“People not going into hospital”
In Yorkshire and Humber and the North East the regional forums have combined to work closely with NHS England colleagues to develop resources and information sharing events about Transforming Care.
They have planned two Transforming Care Partnership events, one in October in Yorkshire and Humber and one in November in the North East. The events will support local Transforming Care Partnerships to think about co-production and how this can be embedded within local plans. They will get support on how to engage people and families along with sharing best practice. The sessions will be a round table discussion with each Transforming Care Partnership completing their own PCP Path.
They are also running two further people and family events.
The events are being held in ATUs in Yorkshire and Humber and the North East. These events will be for people who are currently in low, medium or high secure units, their family members and support staff. These event will be about giving people and their family members key pieces of information about their rights and inspiring hope.
Essex, Southend and Thurrock’s experts by experience group reported that they have been looking at the easy read ‘Essex Transforming Care plan’ but have said that this is not easy read and they will be asking for it to be redone.
The North West have reported that they have a large well established coproduction network which meets regularly. There are at least 2 opportunities across the NW each month for Commissioners/ Self-Advocates and Families to meet and discuss current issues. Everyone with a learning disability and/or autism is affected by Transforming Care. The Regional Forum and Regional Family Forum have said, and continue to say, very loudly that this must not just be about hospital beds this must be about creating and supporting communities as a way of preventing unnecessary admissions too.
The coproduction network is continuing to work closely to coproduce plans in the North West providing many opportunities for people to get involved and informed.
Attendance at the region’s Confirm and Challenge group meetings continues to grow in numbers with links to each CCG/ Local Authority area in the North West. All the plans, meeting notes, dates, information about ‘numbers’ and agendas are shared on the network’s facebook page ‘Transforming Care in the North’ as well as shared on distribution lists which has links with local groups in every area who also help to distribute information.
The North West have developed a one page information leaflet for experts by experience to leave with in-patients and families so they know how to find out more and are working to create more opportunities for experts by experience to meet with current in-patients.
An expert by experience has been involved in reviewing all out of area in-patients for Cheshire/Merseyside.
Some self-advocates and families have continued to feel that those of them who are connected – and those numbers continue to grow - often know more than paid people locally about Transforming Care. Experts by Experience have been delivering briefing sessions to community teams in their areas,
It is fair to say that most people with learning disabilities and their families are still not linked into the wider work have not heard of Transforming Care or know what is happening locally. Most public service employees are not aware, or may be aware but not clear and those are the people who can help us connect with new families who are not already linked to peer support networks. The North West is working to address these issues.
The North West regional forums have reported that part of the issue of some people not knowing about Transforming Care is that the people that come along to confirm and challenge meetings etc quite often are not the people most directly affected by the work in relation to bed reduction. Most people have not, and never will, spend time in an ATU.
The North West have supported experts by experience to attend well over 500 CTRs in the NW and have developed ways that support those patients and their families have the chance to learn more about Transforming Care at the CTR to enable better links, including going to meet with in-patient groups.
The North West are still looking at how they better link to hear the voices of children/ young people and their families who are not involved in any meetings and they held an event in September focusing on children and young people. They are working closely with children and young people in West Cheshire in relation to Integrated Personal Commissioning and are linking that work closely to the transforming care agenda locally and regionally
All the people who come to the coproduction network meetings know more about Transforming Care and have been actively involved in developing local Transforming Care plans, the challenge continues to be to reach wider.
Individuals and families are reporting that they now get such little support that they are reluctant to use the support they get to attend meetings. This is a real challenge in ensuring that self-advocates and families get good information.
The North West have developed social media to reach wider to people who don’t want to get involved in meetings etc. in a relatively short space of time their page has 240 likes. Through this they have shared the plans from across the North West, information about events and meetings, photos, notes etc.
In Oxfordshire, there is increasing awareness of the work of the Transforming Care Programme Board, as a result of previous engagement events. The South East and London regional forums are also networked with Bringing Us Together to support the work they are doing across the UK for families.
These, plus the engagement event they ran across the region in May 2016, through the NHS England Engagement funding has spread the work more widely and has led to greater awareness and also commitment to working on the issues, based on the fact that the next event in Oxfordshire has doubled the numbers of attendees from 55 to 115.
Locally, in Oxfordshire, the region has seen a recent increase in the numbers of people who are placed in secure units. The numbers are not high, compared with some parts of the country, but it is disappointing that the numbers have increased again.
The regional forum intends to formally write to the Transforming Care Board to find out why this has happened. Some of the people who are out of county have autism and mental health needs, rather than learning disabilities.
The region have some thoughts on why this may be happening. The problems with Southern Health Foundation Trust mean that the local unit remains closed and there are discussions about what should happen to the site in Oxford. This is not under the control of the local Clinical Commissioning Group as it will be decided by Southern Health FT and by NHS Improvement.
Local people are very concerned about the loss of local funding, if this site is sold as it could affect what can be developed in Oxfordshire. The nearest other unit is at High Wycombe and this is closing. This is run by Southern Health FT.
The region are also concerned at the number of people in St Andrews as they have concerns about the safety of patients in St Andrews
They are also concerned that St Andrews and other private hospitals are continuing to expand, despite what the Government says should happen.
London and the South East region want to know what the Government are going to do about this.
The region has reported that it is proving very difficult for some families to get the support they need, so there are problems with getting skilled support workers in the South East and London, where it is expensive to live and where people can get easier work.
One young person is due to be discharged at the moment but cannot get enough staff to build a team. There is a high risk he will be re-sectioned if he does not get a good staff team around him when he moves back into the community.
We also know from the CTR work that some members of the region are involved in that there are people who were moved on early but now some of the people that remain have higher support needs and do not have good enough community–based support with skilled nurses to help them move on. These are people who have been in medium secure units for years in some cases.
There is growing awareness of the TCP leads in some areas, especially the shire counties but London TCP is complex because of the number of boroughs and this does not make it easy.
London and the South East reported that in some areas, local self-advocates are not being involved properly as information is not accessible enough and time is not always taken to make things easy to understand.
Timescales put a lot of pressure on the TCPs to work quickly and this does not help people with learning disabilities, or autism.
More work needs to be done away from formal meetings to give people with learning disabilities and mental health needs or distressed behaviours a chance to work on the issues at a slow pace.
Linking families to other families through projects like Bringing Us Together could help enormously.
Local people working together
In Essex, Southend and Thurrock there is an experts by experience group consisting of people with a learning disability, their advocate supports and family carers. The group is co-chaired by someone with a learning disability and a family carer and both attend the transforming care board.
The group has been going for just over a year and has been very much involved in designing what the care pathway should look like going forwards.
They have had a series of workshops for each of the cohort groups – there have been meetings for people who have experienced the service or may in the future and family carers, there has then been a meeting of practitioners who have looked at what the experts by experience have said and added what they think too, then there has then been a joint meeting of everyone to further discuss what the pathway should look like.
The region reported that it hasn’t always been easy to make sure every voice has been heard and that some cohorts being more difficult to engage with although the families have been very much listened to. For those who have been unable to have their voice heard so far as the method of hearing it has excluded them – the group is looking at speaking specifically to those individuals on a one to one basis that works for them.
One member of the Eastern region reported that“The Council have so worked hard using ‘total communication, to develop pictorial stories. This works very well for people with learning disabilities and professionals to help them think who they are doing this work for”.
Another said “Commissioning Officers are more comfortable seeing people with learning disabilities around the table and thinking about them”.
But other comments included “A County wide CCG meeting said the first meeting would not be appropriate for people with learning disabilities to attend and said they would set up a separate meeting for them, this still has not happened”.
There was a general feeling that whilst some areas were really working hard to co-produce plans others didn’t really ‘get’ co-production:
“Professionals think it is a stage in the work, not all the way through”.
As outlined in the ‘Good information’ section the Yorkshire and Humber and North East regions are working together with self-advocates, families, NHS England colleagues and Transforming Care Partnerships to inform, work together and develop plans.
In the West Midlands just over a third of groups and self-advocates were involved in planning around Transforming Care. Families reported knowing little about the Transforming Care Plans. Self-advocates and families felt that transforming care was complicated, and that not enough easy read information was being produced to help them understand and get involved in their local plans.
Lincolnshire have just advertised for a person with a learning disability to be an expert by experience within the Transforming Care Team – this will be a permanent role (16 hours per week). There is already a person with autism working in the team.
In Lincolnshire there is a Transforming Care Team who are leading on this work. They ran information sessions across the county to explain more about Transforming Care and the work they do. Very few people attended.
In the North Westthe coproduction network have links to family and self-advocate groups in each Clinical Commissioning Group/ Local Authority area who are encouraged and supported to get involved in developing local plans and monitoring progress.
Information is shared with all the groups who are invited to local meetings the notes etc of which are shared also.
Experts by Experience have visited local group meetings to brief people also.
In Cheshire, Warrington and Wirral the Transforming Care Board is co-chaired by an Expert by Experience who has a learning disability. Other self-advocates and family members representing each delivery hub area are also on the Board
Sub Regional Confirm and Challenge groups have shared some key questions that they have said need updating at each meeting these include
Number of discharges
Number of delayed discharges and reason
Number of admissions and reasons
Number of admissions avoided
Number of readmission and reason etc.
In Oxfordshire, the CCG and the local mainstream mental health trust are working hard to find out about what families think and about what people with learning disabilities want. They are also working with people with autism and their families.
There is a new LD Programme Director at Oxford Health Foundation Trust. This has helped a lot as she is very good at working with people with learning disabilities and families. She is meeting people informally on a regular basis as well as at the big meetings. The CCG have also given us a lot of time and are listening well.
The South East London TCP coordinator said that they were planning to set up a forum for self- advocates with lived experience but as yet there are no further detail for how this is going to happen.