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.

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Dementia Awareness Week – My Wish List for Health and Social Care Professionals

Today is the start of Dementia Awareness Week. The Alzheimer’s Society are running a campaign ‘Remember the Person’ which is a good byline, if only it could be remembered.

my father enjoys the art at the nursing home

In the wave of headlines talking of ‘dementia timebombs’ and ‘care crises’ its unsurprising that the presentation of ageing and dementias (although important to note that dementia is not a part of the ‘natural’ ageing process) is seen in negative lights and that ‘remembering the person’ is often the last thing that happens.

This is important generally, but it is particularly important in health and social care settings when all too often systems have been commissioned and organised for people who do not have dementia – and services are not making allowances for the additional time and skill needed to be able to give people who have dementias the dignity of improved communication and facilitated communication.

While the Alzheimer’s Society concentrates on the ‘Remember the person’ in day to day life, I’d like to add my own ‘wish list’ to their campaign in terms of health and social care professionals, managers and commissioners and add a few pleas.

 

-Remember that caring for someone with a dementia, whether at home,  in hospital or in a residential setting, requires particular skills and commission appropriately. Time for training for staff and space and time to promote communication has to be built into commissioning costs. This cannot be done in 15 minute slots. It cannot be done by agencies that do not offer consistency of care. This is detrimental to the individual who is cared for and the family around them.

 

– Remember to support the family and friends of those who care for people with dementia. Do not punish a family financially and through pulling back support because you are relying on their family because the more pressure that is put on family carers without support, the greater the costs in terms of longer term ill health and distress. Support doesn’t always have to have a high financial cost. It can be about support in other ways and linking in with carers services. They are there for a reason.

 

But

 

Remember that not everyone who has dementia has family or friends around to advocate for them or support them. When you roll out programmes like ‘personalisation’ and automatically assume that everyone wants ‘direct payments’ and deliver two tier qualities of service, they may (and currently do)  exclude those who may not be able to manage the direct payments themselves and who don’t have family to advocate for them. There is an imperative to bring the voice of people who lack capacity to the agenda of ‘choice’. My own solution would be to build in the requirement for independent advocacy into the processes and into the budgets. We must demand better in terms of personal care delivery for all, but especially those who cannot or do not feel able to (due to power imbalances) speak up for themselves.

 

Remember that the person who is being cared for is not one of ‘the elderly’. They are a person and an individual  who has loved and who has been loved. They are a person with aims, ambitions and goals. They might not be able to express them as well as in the past but having memory problems does not mean that someone necessary lacks capacity or communication skills – it can though, take more time – regard humanity as having worth. When we have to make decisions on behalf of others, remember to treat everyone as you would want to be treated but remember not everyone wants what you would want.

 

Remember not to dismiss or diminish those who have dementia. While, depending on the type of dementia ‘recovery’ can mean different things, what it absolutely does mean is not giving up hope and building on the strengths of those around. We have to think about living positively with dementia. Too often within social care and health services, I have seen other services discriminate against people with dementias and older people because they make assumptions which are dismissive. We should never make assumptions and never extinguish the hope of facilitating a better quality of life which build of the strengths of individuals. Never.

 

Let’s hope that Dementia Awareness Week is successful and makes providers and commissioners dwell on the need for awareness of the issues of dementia, as well as the ‘general public’.

photo by Susan NYC Flickr

What is Choice?

Lansley and Burstow and those in the Department of Health have extolled choice as an aim to strive towards in both health and social care. ‘Choice and Control’ was used as the key phrase as the agenda moved in Adult Social Care and it has been picked up as the NHS and Social Care Bill made it’s way through Parliament. After all, who doesn’t want choice? Who doesn’t want control? The answer is that not everyone is has the capacity or desire to make a number of choices in critical situations . It worked to an extent in social care in so far as those who are able and willing to choose or those who are well equipped with better funding and family advocates are able to choose.  However we have also seen the policy struggle behind in promoting true choice or in fact, any choice to those who are not as able to pick up the mantle themselves nor who have informal social networks to assist in this respect.

Does having ‘choice’ mean seizing control? Are choice and control two parts of the same coin? Does one lead to the other? Perhaps. My concern is with those who are either unable through issues of capacity or illness or unwilling (because – you know – sometimes that’s a real choice to be made too) to actively ‘choose’ the type of care they receive or the way the care is divided into a support plan.

Where we see the ‘managed’ local authority support plans, we see little ‘choice’ and no control. We see the same large agencies with block contracts tied into providing the same packages of care on the same terms that they always did. The promises of more flexibility have evaporated into the ether of local government spending cuts.

I’m not against ‘choice’  but I’m completely against false choice. I’m against the meaning of the word ‘choice’ being warped into something that makes good political capital for the government with no meaning when ‘choice’ has not been extended in any real terms. I’m against lazy use of the word ‘choice’. The government (and that’s the last government as much as this one) seem remarkably fond of it. Funny, that.

I urge anyone who hasn’t read Max Pemberton’s piece in the Telegraph a couple of days ago to take some time to read it. He writes about contract won by Virgin Healthcare to run services in Surrey.  He explains this notion of ‘choice’

. The emphasis on choice was something that was repeated ad nauseam by ministers in an attempt to sugar the bitterest aspects of the Bill. The legislation would provide choice, we were assured. Everyone likes choice, don’t they? And we all nodded in innocent agreement.

I have argued before that in a healthcare setting, choice is a misnomer: all hospitals should provide an excellent level of care because so many people – the old, the infirm – are unable to exercise choice because of geographical or physical limitations. But only now that we can see the shape of the NHS Bill can we truly assess what choice actually means.

And this is the reality as it exists more starkly in health care than in social care.

I chose my local hospital for treatment because it was the only one I could reach within an hour by public transport. The people who live where I live will be making similar ‘choices’. Those with access to cars may make other choices and go to ‘better’ hospitals further away (although I have to emphasis my treatment was great at the local hospital even though it’s ‘ratings’ and ‘feedback’ are poor!). Those who can only access public transport will have less choice.

Similarly, my GP is on the same road as me. I have had gripes. Do I go to another? No, because when I’m sick, I want the nearest surgery. I don’t have time to research the different specialisms and natures of the GPs around me. This would be even more notable if I were in a rural area.

So who is this ‘choice’ for? For the class of people that the politicians pander to. Those who have the means and ability to choose? How can we truly make choice genuine and meaningful in systems which inherently try to blind themselves to the different cultures. attitudes and natures which do discriminate in the way access to choice is made.

Perhaps this is a way to increase equitable services and access to services across health and social care. I have long believed that advocacy may be a solution. Sometimes I walk away from work and realise that the people that I spend time with on a day to day basis are not the people that politicians either speak for or to. That’s why, as a social worker, it’s important for me to remind and nip away at these groups of people who won’t be clamouring for their pens (real or virtual) to engage elected members.

We have left behind a whole swathe of people who have not been able to ‘choose’ are a part of the personalisation agenda. We must push on and the voices will grow louder as others see this happening in healthcare.

Choice is a luxury of the more able. Good universal services for everyone must be the essential bedrock.

The NHS and Social Care Act has passed, but the voices must increase. We who can choose much speak for those who cannot.