By Jonathan Beebee

Today CQC announced the release of their State of Care report. Learning disability support was a leading headline. The key points were that learning disability hospitals are continuing to fail people, going from 1% being inadequate last year to 10 % this year. Additionally, the declining numbers of learning disability nursing was leading to a decline in skills in the workforce. They describe these two components as the “perfect storm” for an impeding crisis in learning disability support. For many of us, these issues are not new news but it is much appreciated that CQC are adding their weight to this now. I wanted to share a few thoughts on what is happening in my view, and what I feel the solution should involve.

Tonight Radio 4 has aired a show “Transforming Care – Is it working?” The show can be listened to on BBC iPlayer here https://www.bbc.co.uk/programmes/m0000mkd

The BBC have obtained information from NHS Digital that indicates the use of physical restraint has increased by 50% in the 12 months from 2016 – 2017, and the figures from 2018 are projected to be even higher than this. The Transforming Care target of closing 35-50% of inpatient beds is not going to be achieved by the time the Transforming Care programme ends in March as only 410 inpatient beds have been decommissioned and the number of inpatients has gone from 2,600 to 2,400 during the programme. Worryingly the amount of under 18s in hospital settings have doubled. We wanted to issue a public response to this programme and the issues it has raised.

Jonathan Beebee, Chief Enablement Officer, said:

“First and foremost my thoughts are with the people with learning disability who have been physically restrained. Although sometimes necessary, it is not a pleasant experience for anyone who experiences this nor for the people who have to apply these interventions. We know that physical interventions make situations worse before they resolve them, as the natural reaction when someone holds you is to fight against it. We also know there are many reasons why people with learning disabilities show behaviours that challenge others that lead to these interventions. They may be distressed, unwell, in pain, or have no other way of communicating a need. People with learning disabilities need skilled staff who can understand the functions of these behaviours and meet the need, rather than interventions that just respond to the symptoms.

Secondly my thoughts are with the families of all people with learning disabilities. It must be very worrying to hear headlines like this, whether your family member is in a hospital environment or not, as I am sure you will be thinking this could be happening to your family member. Sometimes we can forget how the people we support and their families are affected by reports like this.”

Shirley Large, Parent of Louise, a young lady with learning disabilities that PBS4 supports said:

“The changing composition of the workforce is a significant contributory factor. In addition, the reduction in Local Authority and general Government spend for supported work and developmental opportunities is also having a huge negative impact on the lives of vulnerable people who already face inequitable life chances and opportunities. The NHS Digital data shows that patient on patient assaults are rising and the instances of face-down or prone restraint is also rising.

I am extremely concerned about care and support generally but I do not see any national body that now campaigns for the basic human rights of people with learning disabilities. Every time we have a report that draws together the health or social care data showing the appalling life chances of people with learning disabilities there is a public outcry that quickly evaporates because there is no real co-ordinating strategic body to develop, implement and monitor change. Transforming Care – albeit a very important policy – only looks at one area of the puzzle and is simply not comprehensive enough.”

PBS4 would like to make the following points regarding this report:

• It is important to note that, although it should only be used when there is no alternative, at times physical interventions are required to keep people safe and to protect others. This should be done by properly trained staff who have been taught a recognised physical intervention package, and the physical interventions should be properly assessed before use, and reviewed after use. We fully support that the use of physical interventions should always aim to be reduced, but we accept that physical interventions may be an essential part of responsible support provision. This is not to condone that there has been an increase in its use, merely to acknowledge it can be a rational part of responsible support provision.
• It is easy to read the headlines from this and jump to the conclusion that hospitals are bad places. People who have been admitted to hospital usually have done so because they have had a very distressing time at home (whether with family or with support). Physical restraint may have also been happening at home, but it has got to the point where it is no longer safe for them to remain there. There is not data available on restraint patterns in non-hospital environments. The work of the Transforming Care programme has made great steps in ensuring hospitals are not considered homes and that the length of admissions is reduced. It may be that shorter admissions mean that the hospital environment is less familiar for people with learning disabilities who are admitted, and the teams there are not as familiar with the people they support which may lead to an increase in incidents. There are many factors that could possibly affect this increase and we do not think that vilifying hospitals is the answer, which is a risk with the headlines from this report. We recommend that an open mind is kept when hearing this report as this is a complex issue with many factors that could be affecting this increase.
• We have fully supported the work of the Transforming Care programme and, although the targets set look like they will not be met, we appreciate the great work that this programme has achieved. We are concerned that when the programme ends in March there will not be the drive to continue to push this agenda forward. We ask that NHS England and the Local Government Association extend this programme, or refresh these efforts with a new programme of action to continue this momentum. 
• There has been a 40% reduction in Registered Nurses in Learning Disabilities since 2010. These cuts have been heavy ended at senior nursing positions. We feel a reduction in highly skilled nurses to provide and lead on support of complex people will lead to restrictive practices increasing. We ask that NHS services employ more Registered Nurses in Learning Disabilities to ensure people with learning disabilities have access to those trained to provide and lead their support.
• Since Winterbourne View, Government initiatives have all recommended the use of Positive Behaviour Support (PBS). We are concerned that the term “Positive Behaviour Support” is used too liberally by NHS and other providers, and that there are no clear markers of the quality of Positive Behaviour Support that is provided. This has been attempted to be addressed by the PBS Academy who have recommended standards for PBS. However, there have been concerns raised that these may not adequately describe PBS and they may detail person centred support instead, which alone is not indicative of PBS. PBS should be underpinned by the science of Applied Behaviour Analysis. This clinical intervention requires highly skilled professionals to deliver it, as there are significant clinical risks and ethical considerations in its use. When mis-applied, or partially applied, there are risks it will not be effective, or worse that it may do harm to people it is intended to help. Subsequently, interventions that claim to be based on PBS but are not may lead to a lack of faith in the intervention. PBS has a lot of potential to help people with learning disabilities who are currently needing physical interventions. We ask that all providers who claim to be delivering PBS have a registered/certified professional trained to Masters level in Applied Behaviour Analysis to oversee these interventions. Having support workers who have done a short course in PBS is not enough. People with learning disabilities, especially if they have got to the stage of needing a hospital admission are entitled to skilled, qualified support and safe use of clinical interventions.
• The lack of skilled support workers is seriously impacting all services’ ability to provide effective care for people with learning disabilities. All vacancies in health and social care get a low number of responses, turnover is high, and finding any staff is hard enough let alone finding staff with the right values who stick with it long enough to build skills. We need a national strategy for the recruitment, retention, and career progression of support work level staff that demonstrates what a rewarding career this is and how great it feels to go home knowing you have done more than a job, you have made a real difference for that person.
• BILD, via their Restraint Reduction Network, shared a video from one of BILD’s employees stating these results were “Completely shocking”. Many of the physical interventions used in this report will have been using BILD accredited physical interventions and following the BILD Code of Conduct. The people administering these interventions are generally caring staff trying to do their best. The Code of Conduct has recently removed its content relating to PBS. We ask that there are mature and rational conversations regarding physical interventions, that those accrediting physical interventions should have some leadership on. We feel that accreditors of physical interventions should recognise that there are times when physical interventions are necessary and that those who apply them generally are upset after doing so, whilst continuing to reinforce the message that physical interventions are the last resort and we should always look to reduce these. Accreditors should support those who are following their code, rather than condemning all physical intervention use. We also feel the accreditors of physical interventions should support the work of those who buy into their accreditation system, as most providers of physical intervention training are also committed to reducing the use of physical interventions and when they are used they are done in the safest, least harmful, and most ethical way.
• The significant increase in young people being admitted is extremely concerning. We feel that this may be a reflection on the reductions in support that is available to young people with learning disabilities and their families. We ask that local authorities and CCGs focus on effective support being available for young people as early intervention can significantly reduce the costs of long term support and avoid trauma of hospital admissions and the incidents that lead to these admissions.

We recognise that physical interventions and hospital admissions for people with learning disabilities are emotive subjects. We fully agree with the views that physical interventions should not be used and that hospital settings are not the right places for people with learning disabilities. However, with the support structures that are currently (un)available, hospital admissions and physical interventions are sometimes required. We too are shocked by these results and hope our response here does not undermine our views that the results of this report are totally unacceptable. Yet we feel hospital use and physical restraint use are the symptoms of the current challenges facing people with learning disabilities and their families. They are used when there is no alternative. The problems that lead to these symptoms need to be addressed if we genuinely want to reduce how often these symptoms arise.

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