Beyond Winterbourne

Yesterday, the Department of Health published ‘Transforming Care : A national response to Winterbourne View Hospital’ (PDF)  the ‘final report’ about learning and developments following the case which highlighted, via a BBC Panorama documentary, the systematic abuse which was embedded in the running of a private hospital for people with learning disabilities ‘with a stated purpose of providing assessment, treatment and rehabilitation’.

The failings were found not only in operation of the hospital  but in a complicated and confused health and social care system which on the one hand seems to have been moving away from ‘institutionalisation’ over the past few decades while on the other hand commissioning services which embed institutionalisation and powerlessness into failing and very expensive systems’. The case of Winterbourne View also highlighted the failure of the regulator, the CQC, to respond to information provided by a whistle-blower and of local authorities and commissioning NHS Trusts to actually quality assure the services which are being provided.

Another related report which was also published yesterday (PDF)  came from Family Mosaic – a housing association which provides supported living services which highlights its own failings in terms of poor care and proactively looks at new policies and ways to turn this around. In a way, the Family Mosaic document – is a testament to an organisation which wants to learn pre-emptively and the organisation should be applauded for producing it.

I want to look at some of the issues in both these reports as I think they are  linked,.

Lessons from Winterbourne View

The introduction to the report sets the context of Winterbourne View Hospital – a placement for 24 adults with learning disabilities. The report explains that 48 patients had been referred there since its opening in 2006. The average cost of a placement was £3500 per week and

‘13 were referred by commissioners within 20 miles

12 were referred by commissioners within 20-40miles

14 were referred by commissioners between 40-120 miles

9 were referred by commissioners over 120 miles’

14 separate English NHS commissioning bodies had acquired places there plus some unspecified (presumably a problem with exact data) from Wales..

You’d think that maybe there’d be quite a lot of quality assurance going on with all that money streaming in.

Both the Serious Case Review and this report pick up on the amount of lost opportunities in terms of communication between agencies – between commissioners and between primary and secondary health care services. There has been a lot of confusion – not least from the Secretary of State about the position of Winterbourne View but that fact that it was a hospital and received detained patients (rather than a care home which it has been incorrectly yet frequently referred to) means some of the responsibilities and monitoring processes would be different.

The police, hospitals, commissioning bodies, local authority (who was responsible for safeguarding alerts), CQC Inspectors and Mental Health Act Commissioners seemed to have failed to ‘join the dots’.

While the Serious Case Review goes into detail about what went wrong, this report is more interesting in terms of what is going to happen next.

What is happening as a result

Immediately the CQC changed some of the systems for pulling in whistleblowing information and started an inspection programme for learning disabilities settings.

There was to be (and is to be) a focus on more local settings where possible as distance from family and familiar settings is crucial. Where it is not possible the placing authority should remain in close contact and plan moves back to local areas as soon as possible. A long term distant placement is not an option.

Hospital the report states, which should be obvious I guess, is not a long term placement and should only be used for the minimum time necessary.

If it is necessary at all.

The report talks about the need to listen to people with learning disabilities and their advocates as ‘not listening’ was a big failure. It’s important that listening is beyond hearing what someone might say as well – particularly if there are communication difficulties. It’s important that those who don’t have families to advocate for them are heard as well. Fortunately the report touches on the need for strong advocacy services to be developed.

What will happen

The Department of Health has set a timetable for June 2014 for a ‘rapid reduction in the number of people with challenging behaviour in hospitals or large scale residential care’.  These numbers will be monitored by the DoH.

I am interested when the report talks about ‘people with challenging behaviour’ if they are just referring to people with learning disabilities. My hope is that they aren’t and this will apply equality to those people who have more advanced dementias and may display behaviours which could be interpreted as challenging due to communication difficulties

There is an emphasis on ‘personal care plans’ being developed which partly shows the failing of the personalisation agenda to date as it has completely passed by swathes of people with the highest needs. Maybe there’ll be some attempt to ‘catch up’ now. Let’s hope.

Interesting to that the report nudges the CQC to consider the ‘model of care’ delivered in terms of regulation and compliance. .Personally I’d see that meaning that these larger institutions inherently carry a ‘higher risk’ but it will be interesting to see how that develops.

Interesting that the report focuses (rightly) on the involvement of ‘families and self advocates’ in driving quality and change. My only comment would be a plea for the Department of Health not to forget those people who have very high support needs and who are, due to their cognitive impairments, not able to ‘self-advocate’ and who do not have family advocates. There is a gap here and often these people are at high risk of abuse due to the lack of ‘supporting voices’. There must be a way for formal advocacy to speak on their behalf.

Strengthening Corporate Responsibility

The report also looks at the organisational failings of Castlebeck and the lack of responsibility taken by the organisation itself.  The report urges the CQC to take more enforcement action organisationally if necessary and there has been a move to appoint ‘Corporate Compliance Managers’ – presumably to hold large organisations to account.  The Department of Health will also be looking at the way the CQC are able to ensure the ‘fit and proper person; test which is applied to registration can apply to organisations – whether a board member is nominated to be responsible. However the powers do not exist in legislation for the CQC to check more than one appointed person. This is something that strays into the ‘to be decided’ part of the action plan but no doubt will be an interesting space to watch.

Improving Practice

The report highlights good practice in the hope it will be modelled  more broadly. A voluntary register for people working in adult social care is being mooted. Personally I favoured full regulation of the social care workforce but that’s likely to be too costly to organisations who are working on minimum wage payments to many staff whom they don’t necessarily want to professionalise even though the work is crucial. The low status of social care work is inherent in the attitudes of employing organisations. Training is important though and so is modelling of good care. While compassion doesn’t cost, environments in which it can flourish are better sustained when staff aren’t under constant pressure and are treated, themselves, with respect.

Whistleblowing mechanisms are mentioned and tightened where they haven’t been already.

Particularly interesting to me as a (now) ex-AMHP and BIA was mention of the Mental Health Act and Mental Capacity Act. The report confirms that 73% of the people are Winterbourne View were detained under the Mental Health Act. They should have had statutory protections of appeals and access to IMHAs. It also makes one wonder under what grounds the other 27% were being detained. Was it –really- ‘informal’? Were DoLs ever used? If not, were there any questions asked by those visiting about why or why not?

One of the most interesting ‘key actions’ to me is that

‘The Department of Health will work with CQC to agree how best to raise awareness of and ensure compliance with Deprivation of Liberty Safeguards (DoLs) provisions to protect individuals and their human rights and to report by Spring 2014.

I have a particular interest in DoLs – their use and their lack of use so will certainly be keeping a VERY close eye on this. I’ll try not to be cynical. I’ll really try.

Family Mosaic’s proactive report

Family Mosaic’s ‘No Going Back’ report (PDF) unfortunately has faded into second place in this post but it almost deserves more than one post to itself however the themes link in so tightly with the Winterbourne View Review.

I’d recommend that both reports are read together and it is commendable that Family Mosaic as a provider organisation have looked proactively at how they can do better in terms of challenging institutionalisation and poor practice among their own staff.

The report looks at the history of ‘deinstitutionalisation’ and the move to Community Care principles but also where the failings have crept back and cultures where care may be delivered in different settings but where the quality has been in question and abuse has resulted.

The organisation provides examples of poor and indeed, abusive care in its own settings to look at how to improve and what to offer in terms of building a better culture of delivery of care.

One of the interesting aspects they consider is the lack of ‘whistleblowing’ so that staff who might witness poor care and who have been on the requisite training may not feel they are in a position to report it or may not recognise it when they are involved in the delivery.

The report focuses on aims and action points for the organisation as a whole including a more open policy towards whistleblowers and those who raise concerns internally.

It explains clearly basic expectations for delivery of services to service users by staff and all in all, it is a fantastic piece of work by Family Mosaic who should be commended.

Conclusion

These two documents offer a way forward for delivery of care and attitudes towards those who need care. I wish we had a Winterbourne View type document and review of care for older people, particularly older people with dementia and hopefully when the document refers to ‘people with challenging behaviour (a term I don’t really like to be honest’ it isn’t only referring to those in learning disabilities settings – however I fear it is.  We need to have a wholesale reappraisal of large institutional settings for care delivery – be they hospitals for people with learning disabilities or 90 bedded nursing homes for people with dementia. Age/cognitive ability/family involvement/means to self-advocacy cannot determine ones right to dignified and high quality care.

Family Mosaic have presented a good model that moves beyond care for those with learning disabilities – I hope more providers take notice and take a proactive response.

However, there will be costs and if the government is truly intent on building better services across the board and for all sectors, there has to be an understanding that the money will have to come from somewhere.

I hope it will happen. The right noises are being made. I just hope the results are equally satisfying.