Sarah Murphy MS, Minister for Mental Health and Early Years
There has been an elevated level of interest and requests for information on the number of Welsh people with a learning disability receiving long term treatment in inpatient facilities in Wales and across the border in England. This issue was highlighted recently by the launch of the Stolen Lives, Homes Not Hospitals campaign and petition at the Senedd on 17 April 2024.
I am aware that there is currently little information available publicly in relation to this matter which has led to some confusion and potential misinformation circulating about the scale and impact of this issue. I am publishing this update to clarify the current position and outline the significant activity the Welsh Government and our partners are undertaking to help reduce the number of patients with a learning disability receiving their ongoing, long-term care in a hospital setting where a community alternative would be more appropriate and feasible. While this update is being provided during recess in order to keep members informed, I would be happy to give a further statement in due course should members wish to receive further updates.
Our priority and guiding principle continues to be that a hospital bed is not a home and wherever possible, people should be treated at home or as close to home as possible. However, and as uncomfortable as this may appear, we need to recognise that for a very small minority of individuals, whose health and care needs are so complex, treatment in a hospital setting will remain the only suitable option that meets their specific needs. When this happens, we must ensure that their care is appropriate, effective, and meets the highest of standards.
There are between 50-60,000 people in Wales who are believed to have a learning disability. Many of these individuals remain undiagnosed with only around 16,000 adults identified on a GP register as having a learning disability. As identified by the most recent audit of learning disability inpatients undertaken in April 2024, there were approximately 134 Welsh patients with an identified learning disability being treated in a learning disability or mental health hospital setting. This equates to less than 1% (0.8%) of this registered population.
We have recently commissioned the NHS Wales Executive to undertake a series of regular learning disability inpatient censuses to monitor and provide us with the data we require to allow us to develop policies that help reduce the number of patients and length of stay. At present, this information is provided through internal NHS management systems. While this process is being developed, the data provided is indicative only, it has not gone through the appropriate compliance and quality assurance processes required for publication of official data so cannot currently be published or shared more widely. However, we have now commenced the process of formalising this arrangement, including seeking guidance from Stats Wales on robust data capture that meets national standards, to allow us to publish the data we collect on a regular basis.
The NHS Wales Executive have also been commissioned to undertake an internal review with the following aims:
•To understand the reasons for the lengths of stay in Learning Disability specialist inpatient services.
•To understand the processes in place that inform pathways of care.
•To identify individuals who are experiencing a pathway of care delay and understand the barriers to their transitions into the next phase of care.
•To highlight and share both good practice and challenges in service delivery across partners.
The most recent learning disability inpatient monitoring identified that of the 134 patients noted above,
- 85% were receiving their care in a hospital setting designed as a learning disability provision.
- 34% were in long-term continuing care environments.
- 81% were receiving their care in Wales.
- 66% had a dual diagnosis of a learning disability and a mental health condition.
We are aware that not all Health Boards have dedicated Learning Disability inpatient hospitals, and that patients requiring admission to hospital in these areas will access acute mental health settings through specially designed pathways. The vast majority of those being cared for in a dedicated mental health hospital were appropriately housed in a mental health unit due to a primary diagnosis of a mental health condition requiring this specialized care.
There are a very small number of cases, currently fewer than five, where the lack of an appropriate, local learning disability facility means that individuals with a learning disability are being temporarily cared for in what is primarily considered a mental health facility. While this is not ideal, they are all receiving care that is appropriate to their individual needs while discussions continue on finding long-term solutions to their health and care needs outside these facilities.
Every inpatient has a care and support plan that is regularly reviewed to ensure their ongoing care remains appropriate. These are regularly evaluated and assessed to identify if and when an individual is ready to be transferred on to an alternative setting, usually either a long stay setting or a return to community support via residential care, supported living or to a family home.
In addition to reducing the number of patients housed long-term in hospital accommodation, we also aim to reduce the length of time these individuals spend within these hospitals. While we have seen the average length of a hospital stay decline steadily in recent years, we recognise that there is more that can be done in this area.
The average all-Wales length of stay patients have been in their current environment is 3.4 years. The longest lengths of stays across Wales are patients in long-term Continuing Care settings with an average of 6.9 years. The average length of stay in an assessment and treatment unit is 1 year, secure units 2.1 years and acute mental health units/ rehabilitation environments is 1.5 years. More can be done to reduce the time people spend in these settings and we are actively engaged in how this can best be achieved.
There are a number of significant barriers to discharge from hospital, none of which are unique to, or more acute for, the learning-disabled population. These include the availability of appropriate and suitable local housing as well as ongoing workforce challenges such as trained support staff to care for individuals within the community. Discussions between health and social care providers on who should supply and fund ongoing support can also be a cause of delay.
We are working with our partners through the Learning Disability National Implementation and Assurance Group (LDNIAG) to identify solutions and address the barriers to pathway of care delays. There are no quick wins here in a climate of cash strapped public provision and tackling these barriers will require significant levels of commitment, resource, planning and time but we are committed to doing this.
In February 2020 we published the Improving Care, Improving Lives report of adult learning disability inpatient provision in Wales and England. The report reviewed all Welsh adult learning disability in-patient provision commissioned by NHS Wales. It identified that there needs to be improved rigour in the care/discharge planning, monitoring and review of individuals. It made around 70 recommendations for Welsh Government, health boards, local authorities and care providers on how these services could be improved.
Work immediately commenced on delivery of these recommendations but was severely disrupted by the onset and impact of the pandemic. This work recommenced in early 2022 through the establishment of the Learning Disability National Implementation and Assurance Group and officials have since been working closely with our public, third sector and private stakeholder partners on the development of national and local action planning to ensure delivery of the report’s recommendations.
The LDNIAG have three specific task and finish groups working on key areas of Early Intervention, Timely Transitions and Reducing Pharmaceutical Interventions. Each group is set to report shortly with recommendations on how we align our priority activities to meet these challenges.
The LDNIAG have provided me with an interim report on progress against the national actions so far which I aim to share in the coming weeks. I will be seeking a full update on progress against all the actions within the Improving Care, Improving Lives report towards the end of the year and will publish this as soon as it becomes available. At this point, I will consider with partners, extending the work of the LDNIAG to continue to support delivery of the long-term plans and activities we know will need to be taken forward in this area.
My predecessor as Minister for Mental Health met with the Stolen Lives Homes not Hospital Campaign in early May to discuss the concerns they raised. We have since tasked the Learning Disability Ministerial Advisory Group with considering the issues raised in their campaign manifesto with a view to advising us how best to address these concerns and where possible aligning any identified new activity with the work we are already undertaking. Our work will depend upon gathering reliable and regular information and we have already begun the process of collecting and publishing key data concerning the care and treatment of people with learning disabilities. We commenced this with the publication in June 2024 of an overview of mortality rates and causes amongst people with a learning disability between 2012 and 2022. We will use this report as the basis to continue to identify any areas where lessons can be learned to help avoid future unnecessary deaths and improve healthcare.
I hope this statement provides some reassurance of our commitment to addressing this issue and demonstrates the significant levels of ongoing activity that is taking place in this area. Much of this activity will require some time to complete but I will continue to prioritise this matter in the months and years ahead and will be publishing our plans, regular progress updates and details of the data we collect as soon as we have identified an appropriate process and mechanism for doing so. I will also provide members with an update on the work of the LDMAG in relation to the issues raised by the Stolen Lives group in due course.
This statement is being issued during recess in order to keep members informed. Should members wish me to make a further statement or to answer questions on this when the Senedd returns I would be happy to do so.