National and strategic updates from Jo Dwyer
I attended the Learning Disability Professional Senate on 4 December. There are some new resources developed by the Senate that might be of interest to you. The ‘What If’ padlet has been developed to give information for the options available if you are worried about a person with a learning disability and have concerns about they care and support they are receiving What If ... (padlet.com) The Senate has also refreshed the guidance about Delivering Effective Specialist Community Learning Disabilities Health Teams / Services for Adults with Learning Disabilities and their Families and Carers Delivering Effective Specialist Community Learning Disabilities Health Team Support (bild.org.uk) There are other documents in development, including a statement on obesity, a position statement the grouping together of learning disability and autism, and a guidance document about handover between services. I will update you in due course, but would be keen to hear if you have any initiatives locally about those topic areas.
We had an update from NHS England. The consultation for the Oliver McGowan Mandatory Training is closed and the response will be published in due course, with a revised code if revisions are required. The e-learning has been viewed over 1 million times to date with the face to face tier 1 and tier 2 training also rolling out in some locations. Work is underway to consider what training for social care staff should include and how that might need (or not) to differ from the NHS programme.
Draft guidance is in development under the Down Syndrome Act, which will set out how to meet the specific needs of people with Down Syndrome as outlined in the Act and is likely to be out for consultation in January 2024.
The Partnership for Inclusiveness for Neurodiversity (PINS) is funded for 2 years to work with 10% of primary schools to upskill staff in early support for neurodiverse children, with the aim of reducing referrals to specialist services at a later date. PINS is working with NIHR to look at a bid for research to look at the demand for therapy provision, as outlined in the SEND implementation plan.
Review of trends and data from the action plan from Building the Right Support has highlighted that the numbers of people with learning disabilities being admitted to in-patient settings has reduced, but the number of admissions for autistic people has increased.
Baroness Hollins’ report on reducing the use of long term segregation (LTS) was published on 8 November 2023 Baroness Hollins' final report: My heart breaks - solitary confinement in hospital has no therapeutic benefit for people with a learning disability and autistic people - GOV.UK (www.gov.uk) along with the government response. It is hoped that LTS will be a notifiable event to CQC going forwards alongside a programme to move people out of the most restrictive settings and on to discharge.
Catriona Jamieson attended from NHS Education for Scotland (NES) to talk about the NES learning disability team that was set up to address work force issues Learning disability | NHS Education for Scotland Catriona presented the Essentials of Learning Disabilities workstream that is looking to educate and skill up people who are new to working with people with learning disabilities. The training developed covers what a learning disability is, health inequalities, supporting people with learning disabilities (including communication, sensory systems, promoting health, common comorbidities), growing up and growing older, trauma informed practice and psychological wellbeing. The plan is to add to this education package annually. Occupational therapists Audrey Taylor and Claire Wakefield have been part of this work.
In Wales there has been a review of inpatient settings and the report outlining the physical environments of those units will be presented to the Chief Nursing Officer in January 2024.
There is a national implementation and assurance group who look to reduce variation in in-patient provision who are looking to establish what a 'core offer' should look like to reduce variation in community services too.
There is now an agreement between the Welsh government and the medical examiner to support more robust data gathering about the mortality of people with learning disabilities in Wales. Data is being reviewed from 2012 to 2022. To date the data gathered has highlighted very similar issues and concerns to the rest of UK, with major causes of death being respiratory illness and cancer.
Paul Rigg training is now mandated for public facing roles in NHS across Wales. Tier 2/3 training is in development as well as work to adapt a programme for social care and also for the police.
There are plans to review how Annual Health Checks are completed in Wales as there is no conformity currently so there are plans to move to a cluster led process, which can be led by advance clinical practitioners or equally qualified learning disability practitioners. There are also plans to develop the Health Equalities Framework (HEF) into a digitalised version, which will also be translated into Welsh, as well as piloting the children’s HEF.
The Welsh ambulance service is looking at how to implement an electronic flag to highlight a person’s learning disability needs and also any Reasonable Adjustments on their system.
Restrictive Practice and Seclusion guidance was launched in Northern Ireland in March 2023 (Policy to minimise restrictive practices in health and social care published | Department of Health (health-ni.gov.uk)) which has resulted in a significant number of challenges from providers stating that because of this guidance they cannot continue to support the person with learning disabilities that they were supporting. There is an emerging issue of 'handbacks' whereby a provider is handing back the package of care to social care. A consultation about use of seclusion in educational setting has recently closed. The consultation was notably at odds with some health and social care practice so the outcome is eagerly awaited Statutory Guidance on the Reduction and Management of Restrictive Practices in Educational Settings in Northern Ireland | Department of Education (education-ni.gov.uk)
Northern Ireland are also undertaking significant work with the aim to reduce variation across learning disability service models, (adults and children services). Themes include transitions (life changes), health and wellbeing, care and families, meaningful lives and home life. There is also lots of work looking at autism and ADHD pathways as there are long waits for diagnosis and post diagnostic support.
Kathy Peterson is a GP in Northumberland and shared a local piece of work about ‘was not brought’ (WNB) as opposed to using ‘did not attend’ for people with learning disabilities who require support from others to attend health appointments. Kathy said that she knew that the NHS has some awareness of WNB but there were no identified ways to record and report this on local systems, so she has worked to add a code to state 'adult not brought to appointment'. Kathy said that there is already an established system in place for children who are not brought to appointments that includes more questions to be asked/considered, and some of these transfer well to adults who are not brought, so is working now to develop a useable system to gather data (and at the same time grow awareness) about WNB in adult services. There is whole tool kit in development that will proactively outline adults who are at risk of WNB and what to do if that happens. This links further with work being undertaken in the North East and North Cumbria about reasonable adjustments, with the aim to reduce the amount of appointment missed because an adult WNB. Kathy recognises that there are difference in how this will work in primary versus secondary care and is working to address that difference. Is anyone else doing any work locally about ‘Was Not Brought?’
Leanne Gelder shared an update on the NHSE Reducing Restrictive Practice Oversight Group (RPOG) which is a 3 year programme funded to primarily focus on in-patent services. The aim of RPOG is to improve the quality and safety of care people experience in mental health, learning disability and autism inpatient settings by introducing a new model of care. The themes of this work are:
- Localising and realigning in-patient services with the local community
- Improving the culture of care and supporting staff
- Supporting systems and providers facing immediate challenges
- Making oversight and support arrangements for the sector.
The work to be done is nothing new in terms of concepts to embed, but there is still a lot happening in in-patent services that is of concern, and services seemingly need support to put in practice what is known to be needed. Some of this work is to support services to work appropriately with the Use of Force Act Mental Health Units (Use of Force) Act 2018 statutory guidance - GOV.UK (www.gov.uk) which has resulted in lots of applications to the Court of Protection. There is more information about NHSE’s work in this areas at NHS England » Reducing long term segregation and restrictive practice and an event is planned in early 2024 which all Trusts will be invited to, with the aim of developing some standards of digital recording for services.
We heard an update from STOMP/STAMP and there was an ‘ask’ that people enrol on the mindEd STOMP programme which goes through 6 modules that I am informed are relevant to all disciplines, people with lived experience, carers and networks. Please have a look and share more widely as you see fit MindEd Hub The plan is to then move on to build an educational resource about STAMP and Dave Gerrad (who leads on STOMP/STAMP) is keen to have an occupational therapist within the stakeholder group to work alongside the expert reference group. There will be a one-off workshop in late January/early February 2024 to get the process starts. Could you volunteer for that? If so please get in touch with me asap as the timescale is tight and Dave is keen to have an idea of members by 14 December.
We are hoping that Dr Judith Reep and Dr Diana Ramsay will be presenting their work so far on Occupational Rights at the next Senate meeting in March, so occupational therapy will be high on the agenda!
I was due to attend a Growing Older with Learning Disabilities (GOLD) meeting on 30 November, but unfortunately the meeting was postponed due to illness. I will update you once I have attended the rearranged meeting.
You may have already heard about a recent case heard at the court of protection TW v Middlesbrough Council - Find case law (nationalarchives.gov.uk) where a diagnosis of ‘Functional Learning Disability’ was made for a person with significant health needs, but with an IQ assessed within an average range. The British Psychological Society has issued a response Division of Clinical Psychology’s Faculty for People with Intellectual Disabilities responds to TW vs Middlesbrough Council judgement | BPS outlining their objection to the term ‘Functional Learning Disability’, which is not a recognised diagnosis, and outlining what a diagnosis of a learning disability is. I would encourage you to read the ruling and think about how this case law might impact on the services that you work in.
You might also recall that the National Framework and operational guidance for Autism Assessment Services caused concern about how the document outlines the roles of different professionals within an autism assessment service. It outlined very prescriptive roles, which was felt to be unhelpful to autistic people, services and AHPs, and is at odds with current practice, is at odds with some of what the guidance is seeking to address e.g. long waiting lists, and is at odds with other NHSE initiatives, e.g. AHP consultant pathways. Following lots of feedback, including from occupational therapists, it has been recognised that the report resulted in some ‘unintended consequences’ around the specific workforce elements of the guidance, and the team have removed the tables outlining the workforce roles across the five stages of the assessment pathway. The team plan to review the contents of the guidance, informed by the feedback received and are keen to ensure wide AHP involvement. I will do my best to keep you updated.
If you want to get in touch please email me at Joanna.dwyer@gstt.nhs.uk.
Thank you, Jo