Moving On and Looking Back

Forgive me for the slightly self-absorbed post. Blogging by its nature can be the epitome of self-absorption but I attempted to write with a look to the wider world, particularly in the sector I know best, social care. I put this in the past tense as this will be the last post I write.

When I started writing, I had the voice of a social worker and AMHP (Approved Mental Health Professional) in a Community Mental Health Team. I was trying find that voice amid the policy and processes that we found ourselves, as practitioners, caught up in and trying to extend outward some of the frustrations and observations garnered from the ‘frontline’. It felt and it feels like that policy happens from afar, away from the homes I visited, the wards we attended, this was my world and it felt like a completely different world from the one defined by officials in the Department of Health when they remember ‘social care’ is a part of their remit.

I believe wholeheartedly in social work as a profession and social workers as professionals but I became frustrated at the lack of professional leadership. There is no doubt that the last year of my professional life has been one of the most challenging. I’ve worked in social care for 20 years (gulp – I look younger, I promise!) as anyone can imagine, I’ve seen many changes in that time. ‘Reconfigurations’ were nothing new to me. Working with change and in organisations that change frequently is one of my fortes but the most recent one was the most painful by far. While parts of my job, I loved – particularly when I was able to work with and alongside individuals and families and walk with them through some of those moments of crisis – working in an organisation and delivering services which were being ripped to pieces was difficult. Defending organisational decisions became impossible. The fight was still there inside me to promote and present a better way of working and honest interactions with everyone who needed our service, I saw waiting lists grow and discharges of people who I felt would benefit from more support. I saw the effect of the programme of cuts in the NHS in a very visceral way. I was and am very lucky. I have been able to walk away. I find myself in a job that excites and interests me and presents many new challenges. The same ease with which one can move on cannot be said for those who are reliant on the support of social care services and I remain acutely aware of my privilege in being able to.

I found a different (but related) job and thought I’d be able to continue writing with the passion I never stopped having but I can’t. The situation has changed and the voices need to be heard from the frontline I’ve stepped back from. I have become the person I resented for so many years. As a social worker, I always had a hint of scorn for those who took the ‘desk jobs’ and moved away from the direct work with people who use the services we provide but I’ve become one of those people.

In defending myself to the old me, I’d say that changing the world can happen in different ways. I am no less committed to the same ethical standards of making the world of health and social care better for those who use services. I am seeing that social work and social care happens in many different places. Is it an attempt at justifying my decision to leave social work behind? Yes, probably but that’s something I’m reflecting on a great deal at the moment.

I have been disillusioned by the time I spent working in the statutory sector as a social worker. As a parting salvo as I head off into the sunset, I want to reflect on a couple of themes that revolve around social care at the moment.

Kneejerk funding decisions lead to more expense, both in terms of quality of life and finance in the longer term. I’ve seen panic cuts both at a national and local level. The problem with panic cuts is that the things that are easily destroyed cannot be built back up in the ‘good times’.

‘Choice and control’ the buzzwords of change ring very hollow to me now as I saw in both the NHS and the local authority, the way that data and information is manipulated to meet performance targets that are meaningless to people who use services. Choice is one of the most nefarious words in the sector in my opinion. ‘Choice’ is very much defined by what organisations allow to be chosen and the confidence, communication skills, advocacy support of the individual doing the ‘choosing’. I railed against processes that favoured ‘he who shouts the loudest’ but it was to no avail. Presented by the government as a panacea of positivity, I have seen the downside of ‘choice’. It has been the creation of a two-tier service in adult social care that provides those who are able to choose with fantastic opportunities but those who may not have the capacity/support to choose are left lagging behind, in poorer, oft forgotten services. With funding drying up and fewer third sector organisations able to pick up the slack, there is a massive void of support which often falls on family and friends – the ‘informal’ support networks that the government still feel able to criticise.

Dementia care is a particular interest of mine. Professionally I have worked in the area for a number of years. Dementia is moving further forward in terms of government policy making and the so-called ‘dementia challenge’ which is currently trying to increase diagnosis rates. That’s all well and good and I won’t enter that conversation but I will say this. In order for dementia to be better understood by the public it has to be better understood by the government agencies who are supposed to be providing the information. There is a horrendous lack of information about the role that supportive social care services play in improving the quality of life for people with dementia. As I worked alongside a ‘memory clinic’ which had been decimated by cuts, I laughed hollowly at the words of the government ministers about increasing diagnosis rates in primary care and for hospital inpatients. See my first point about panic cuts and lack of cohesion. Reading some of the Department of Health missives you’d be at a loss to think they ever discussed any of their plans with anyone with a current social care background. Perhaps the new Chief Social Worker (or one of them anyway) will provide a sticking plaster to this but it’s very apparent at the moment that there is no cohesive, current social care voice in the government department and it makes some of their policies woeful. The level of ignorance even of government ministers who clearly haven’t been briefed by people who understand social care would be embarrassing if it weren’t desperately sad.

Lastly about Social Work itself. I retain my social work registration and will now until 2014 at the very least. I suspect far beyond that as I don’t want to give up my registration. I am very proud to be and to have been a social worker. The ethics and values of the profession can really shine a light and guide many of our colleagues in allied professions and we shouldn’t be shy of realising our own worth. Often I hear social workers talk of status and comparing ourselves unfavourably to nurses, teachers, doctors, psychologists etc. We shouldn’t need to constantly compare. We have a fine profession with its own knowledge base, standards and codes. Having worked in a multi-disciplinary mental health team (and I think being an AMHP helped with this as we are known to be a stubborn and independently minded bunch) I never felt anything but an equal to the other professionals I worked alongside (and challenged – psychiatrists – I’m talking to you ;)). We do need to ‘sell ourselves’ more and we can’t rely on waiting for ‘good press coverage’. Do the job, however hard, with the ethics and values at the heart and remember why we are there – it isn’t to promote organisational will but to walk alongside and guide. Sometimes there are difficult, coercive decisions to be made but reference to values and ethics become all the more important there. The nature of a job that sometimes has a coercive function is that ‘hearts and minds’ will never be particularly straightforward. I didn’t become a social worker to make friends or to swan in adulation of my ‘goodness’. I went into it because I felt it gave me more opportunities to make a positive difference in someone’s life. More often than not, certainly over the last couple of years, it became more about saying what wasn’t possible than what was – but if I could deliver that with as much humanity and empathy and transparency as possible, it could be a start.

Many thanks to Zarathustra for this space and for the support he has offered to me.

And thanks to everyone for reading, commenting and responding over the last year or so. My reasons for stopping are work-related but not in a bad way. I just think my voice has changed now and it’s important that those ‘on the ground’ have the way left open to them to find it. I won’t say I’ll never write again, I may at some point in the future, but if I do it won’t be anonymously I will, though continue to knock around on Twitter I expect!

Goodbye

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.

… And they’re off! But it’s a disappointing start for the Mental Capacity Act

In the line-up for the 2007 legislation Grand National we see the return of some old favourites.  Waiting for the starters’ orders are the Mental Health Act alongside the NHS & Community Care Act. We also see the return of the Chronically Sick & Disabled Persons Act and … surely not … Yes it is, the National Assistance Act is back for another plod around the course, surely he should have retired by now.  We also welcome along one of the favourites this year, in his first year of entry, the Mental Capacity Act is confidently waiting for what must surely be a resounding victory for all those he represents.   They’re under starters’ orders, and they’re off …

… but it’s a rather lack-lustre performance from the Mental Capacity Act 2005 (MCA).  I’m probably not the only one slightly disappointed by the sluggish start; 5 years into the MCA I have to admit that things probably haven’t gone as some of us may have imagined.  I was prompted to write this blog having recalled a recent occasion concerning a gentleman with a learning disability. He asked his carers for support to obtain an application form for a driver’s license and then to complete the form. Instantly, the carers decided that it would be far too dangerous for the gentleman to be driving around and, quoting the MCA, in his ‘best interest’ decided that it would be better if they didn’t support the gentleman to obtain and complete a driver’s license application form. I think the only correct consideration of the MCA were the two words, ‘best interest’ and even they were out of context! On every level, they failed to apply the MCA correctly or even remotely well. If  they had, they would have approached the decision from the assumption that the gentleman had capacity (which, interestingly he did) and provided the support he was requesting in the first place.

This of course isn’t an isolated incident and only recently was also reported about on the Community Care website.  Poor application of the MCA is widespread, it crosses all levels of care professions and it has to be addressed for the sake of those it should be protecting. If I were the MCA, I would be suffering from a complex right about now. Being misrepresented, misquoted, ignored, it’s enough to make even the strongest legislation question themselves!

Some organisations see the importance of MCA training, but where I often see a glaring hole is in people’s ability to apply the principles and use the MCA as the framework it was intended to be. People can usually quote phrases, provide general themes or even list the 5 principles of the MCA but that is often where knowledge and application stop. Carers and professionals alike should be discussing it daily, in team meetings, formally in supervision and informally. They should be applying it to all decisions being made and actions being undertaken on behalf of someone who may lack capacity. They should be questioning everything and inquisitively discussing whether any action or decision being made is the least restrictive or whether a seemingly unimportant decision made by carers or professionals has just had a significant impact upon individual.

The MCA doesn’t have to be a complex piece of legislation unattainable to anyone who doesn’t have a law degree.  It even comes with a very user-friendly Code of Practice to which of course, anyone working with an individual who may lack capacity must have regard for.  But it does have to be a piece of legislation that is used well and frequently by all concerned to ensure that we really do act in peoples’ best interest.

A Culture of Care?

I can’t help it but I’m somewhat unimpressed and uninspired by claims that Castlebeck’s transformation is nearly complete (As reported by The Guardian).  I’m sure Mr Sullivan has done a sterling job in dragging the remains of homes such as Winterbourne View towards acceptable standards but the very fact that such poor standards of care are evident in contemporary care is a shameful indictment on our society.

It riles me not only that such abuse took place in the first instance, but that it wasn’t picked up by the care provider.  Would the abuse still be happening if it were down to Castlebeck to identify it and take action?  I shudder to think that the answer might be a resounding “Yes”.  Also to think what else may be happening within care homes across the UK where vulnerable adults don’t have the benefit of family involvement or carers with the insight to blow the whistle on abuse … or Panorama!

 Having worked with numerous residential and nursing homes, it is not hard to see how totally dependant some vulnerable members of our society are on those paid to provide good quality care:  Care that is monitored and regulated and where safeguarding policies are in place to ensure that those who can’t speak up for themselves are protected from abuse… Really?

I can’t help but recalling one particular home, the manager was sitting in a very well equipped, spacious office when I arrived congratulating herself at the marvel that were her new, glossy brochures. Showing prospective families just exactly how decent the home was with its ample garden blooming with flowers and general good cheer.  Carers smiled on the front cover in a manner that exuded quality, person-centred care from more carers than one could possibly need whilst care-free residents tucked into their gormet meals.

Sadly, the reality was very different:  Insufficiently trained carers that didn’t have the time to answer a call-bell that had been rung for the umpteenth time as the room’s occupant continued to lie in urine soaked sheets.  Then there was the missed opportunity after missed opportunity to spot pressure wounds that were silently getting progressively worse – out of sight, out of mind.  All the time, the owner continued to congratulate herself and confidently sell the homes’ services to prospective new residents and their families.  Oblivious to the reality that was unravelling the other side of her plush office door.

Of course, such business’ need to be well run but when business comes before quality of care something needs to change.  Whole cultures need to change because if the underlying ethos of a home’s manager is developing a thriving business, how can the ethos of carers within that home be anything different … such as caring perhaps.  Whilst I’m all for serious case reviews and learning from past mistakes, I’m not convinced my ministers’ exclamations that, “We must learn from this so that these things must never happen again!”   I fear that they will happen again … and again until the whole culture of care changes to one of … well, care.

I can recall perhaps just a handful of small care homes where the managers rota themselves on shift so they know what’s going on and can identify any training needs.  Where more money is spent on care than on prtraying a good image to prospective new residents.  They may not be glistening with a new coat of paint every 6 months or benefit from TV advertising but they are run with an underlying ethos of care and respect and reflect far more the brochures that are displayed elsewhere, but they don’t have their own glossy brochures.  All they have is a good reputation which gets them by more than adequately.

Returning to the Paralympics

Tower Bridge

On the day the Paralympics begin, I’m looking forward to ten days of excellent competition and sport. One of the things that brings me particular pleasure is the return to the Paralympic Games for athletes with learning disabilities. These athletes were involved in the Paralympic Games for the first time in 1996 only to be barred en masse in 2000 after a Spanish Basketball team were found to be cheating by entering athletes to compete who did not have learning disabilities.

The Paralympic movement felt that eligibility requirements for learning disabilities should be re-examined, at the cost of those athletes who did compete and work fairly through the process. It seems oddly perverse when those who did not cheat are punished more heavily by being removed from the competition than those who did.

And now, after 12 years of exclusion, the 2012 games will see the return of some top class athletes with learning disabilities although the return is limited at this point with competitors taking part only in athletics, table tennis and swimming.

One of the things to get used to with the Paralympics, if you are not already used to following, is the classification system which tries to ensure that there is a fair system of competition depending on the needs of particular athletes and so they are banded together into these ‘classifications’ which are explained on this BBC page.

The classification to look out for if you want to follow these athletes in the track and field  is T20 and F20 respectively. It is 11 in the table tennis and 14 in the swimming.

I’ve been lucky enough to get tickets to go to the swimming and athletics. My delight has been compounded by the fact that I’ll be in both venues to see these athletes compete at the highest level and will be able to add my voice to the thousands cheering for them and the additional battle against discrimination which has needed to be fought in the world of sport which is supposed to value fair play above all and has punished those who have competed fairly particularly hard through their exclusion for twelve long years.

Welcome back, T20, F20, S14 and TT11 – I’ve missed you.

I hope to see many more sports and events added for 2016

Picture by Gary Huston at Flickr