The health care of learning disabled people: basic and specialist

There was a big discussion on twitter today about why the health needs of learning disabled people are often ignored.

I agree that there is a lack of basic care and that learning disabled people deserve care which is just as good as non-learning disabled people.

I believe that one way of the many ways iin which this lack of care shows itself is in the poor provision for learning disabled people, especially those with complex conditions, at 18 plus. The rounded, co-ordinating care of the paediatrician is lost. CIPOLD says:

A striking finding of CIPOLD was the multiplicity and complexity of clinical conditions that people with learning disabilities had. The key problem was the lack of coordination of care across and between the different disease pathways and service providers. This was largely because of the way in which secondary services are organised for adults, which limits the opportunity for a holistic focus on a person’s health and for effective coordination of the various specialists involved. CIPOLD frequently reviewed the deaths of people with learning disabilities whose multiple needs were being served by different specialists, sometimes in different hospitals, with no designated or responsible coordinator for their care. This resulted in each hospital admission being micro-managed as a distinct entity, but without any consideration of the whole picture and the overall pattern of the person’s illnesses, so contributing to their vulnerability, deteriorating health and sometimes their death. 

I think the provision of a medical specialism for these adults would greatly improve care and health. These specialists (adult paediatricians if you like) would also have expertise in communicating and in consent issues. They would help produce the care plan, ensuring all staff were aware if the person’s health needs.

In thinking about the poor health care given to learning disabled people I think of Connor Sparrowhawk who was in the care of a team employed by Southern Health Foundation Trust. The Trust did not think the learning disabled people in its care important enough to receive their care from staff with proper training and support. They employed psychiatrists with little knowledge of epilepsy, despite knowing that learning disabled people often have epilepsy. This, to me, is treating learning disabled as less deserving of good care, shocking in a specialist trust.

I agree with George Julian and Katherine Runswick-Cole that people with learning disabilities should expect and receive just as good care as anyone else. This includes basic care, and also accessible specialist care for additional needs.

The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) Norah Fry Research Centre University of Bristol March 2013          Quote from Page 65

Speaking up; knowing what’s wrong

Mark Nearly posted a disturbing piece yesterday about a residential home for learning disabled people which had been rebadged as supported accommodation and some of the practices there.

I would like to speak up for support workers who might find themselves being asked to give care which is substandard or fails to respect the individual.

When I was a young student in the 70s I worked as an untrained care assistant in a psychogeriatric ward of a now closed psychiatric hospital. The day was an endless round of dressing, washing, toileting and feeding about 30 elderly ladies with dementia. I tried to perform all these tasks with as much care and kindness as I could and became very fond of the patients. (I remember one lady in particular who used to talk to and stroke her imaginary cats – I could almost see them.)

However there were things done then which are now known to be bad practice and disrespectful of the individual. No-one had their own clothes – there were laundry bags full of assorted crimplene dresses and it was a matter of finding one which looked the right size. There was another laundry bag of knickers,but no bras that I remember.
All the women slept in a dormitory, put to bed shortly after tea. There were no activities – it was just looking after their bodies really.

I never questioned what was done. I was inexperienced and was there to learn from people who had been doing the work for years within the hospital system. Now when I look back I realise how awful it was in many ways.

More recently I have had experience of questioning procedures or raising quite minor concerns in the NHS. I worked at the lowest level and it was made very clear that my suggestions or questions were not welcome. I suffered personally as a result and eventually left the job.

So I would just like to say, in support of care workers, that I have great sympathy with their plight, especially today when work is so precarious and demands on them so great.  Care workers are often trained by their employer and told ,”This is how it is done,”. Unless there is something obvious like physical abuse going on, how are they to know that anything is wrong? And if they do speak up they know that often nothing will happen or they might lose their job.

It’s not how it should be but it is how it is.  The only ways  to improve this situation are for support services to be properly inspected, all care workers to have a national qualification, for zero hours contracts to be ended, and for whistleblowers to be truly protected.


Commitment Phobes? The Public Accounts Committee and non-progress on Winterbourne

Commitment Phobes? The Public Accounts Committee and non-progress on Winterbourne View – an update (see end of blog)

On Monday 9th February the Commons Public Accounts Committee examined representatives of the NHS and Local Authorities following the report by NAO the lack of progress since Winterbourne View.

Newspaper headlines declaring that hospitals for people with learning disabilities would close followed and I was a bit puzzled not having heard much in the way of any clear commitments from any of the witnesses.

I have checked through the transcript and found the following:

What has been done:

started detailed management information (to find out numbers going in and out of ATUs)

Done Care and Treatment Reviews on  1167 inpatients, and planning discharge where that is appropriate. NHS England has the power to require these.

In reply to Q39 Simon Stevens says: We have also announced that from April we are setting up pilots across the country for what we have called integrated personal commissioning, which brings together for the first time a health and a social care budget at the level of the individual.  A number of the councils and health bodies locally that have come forward and said that they want to start on that in a few weeks’ time have got a learning disabilities component of that.We will use 2015-6 as the year in which we build on the learning from these pilots.

Actual commitments- or sort of:

Q36 Chair: Are you telling us that there is going to be a closure programme?       Simon Stevens: For some of these facilities, there will have to be.

Q41 Chris Heaton-Harris: …How will you influence CCGs to make the right choices?   Simon Stevens: …Making significant changes in the structure of care provision for the remaining long-stay (not sure what he means by that) services will take joint action by CCG commissioners and NHS England ……We will convene the CCGs and our local teams to drive that together.

Q45 Reply from Simon Stevens re the money needed up front to create the infrastructure in the community services needed: But on the revenue piece, I am not going to sit here and pretend anything other than that work has to be done urgently within the next six months.

Q46 Reply from Jon Rouse: .. we need a more rights-based system…we will cover some of those issues within the intended Green Paper.

Q48: Reply from Simon Stevens:  We will have to do a careful transition map for the particular facilities and institutions that we are talking about.  There would have to be consultation.  I am not naming names, individual institutions today, but am clearly setting a direction of travel.

Q59: Reply from Simon Stevens (regarding only patients in low secure settings without a MoJ or MHA restriction I think)  : What we can guarantee is not only that those people currently in hospital will have had a care and treatment review, but that successive waves of people whom it is thought should be admitted will have a care and treatment review either before or shortly after they are admitted…

Q70: Chair: ..We have an agreement that you are going to go for a closure programme, with details to come out, presumably, in the coming months.                     Simon Stevens: Yes, I would think six months or so.

and re using the Care Act mechanism to mandate CCGs and LAs to pool budgets for learning disability care Jon Rouse says: As I say, we are committed to including it within the consultation document – in the Green Paper In answer to Q81 re the time frame of the Green Paper he says: to take to an incoming Government early, and certainly by the summer.

Q82: Chair: ..And money following the patient – when? ..                                              Simon Stevens: ..The answer will probably be from 2016-17, but for those places that are doing the integrated personal commissioning, that obviously begins from this April.

There are a great many pages – and many phrases such as ‘We will have to..’, ‘I think we want to see…’, ‘We are looking at’, ‘It will take joint action…’ etc  The full transcript is available here if you can face it!

To raise your spirits (?!) the final comment from the Chair, Margaret Hodge, is ‘Well, I think it has been a jolly positive hearing, with lots of commitments.  It is probably sensible that we return to this in something like 18 months.”  We’ll see.

14 Feb 15

Since I wrote this I have been in touch with David Brindle, Public Services Editor at the Guardian.  He attended the PAC and wrote these two articles

He stands by his positive interpretation in these two articles and says that conversations subsequently have confirmed this.  I hope very much that his interpretation is the correct one.

Behaviour modification regimes – what they are really like

Hearing in the last few months about the treatment of Connor Sparrowhawk, Steven Neary, and now Claire Dyer in Assessment and Treatment Units has brought back my horror at the use and misuse of ‘behaviour modification’ or ‘punishment/reward techniques.

Restricting visitors, removal of means of communication or comfort objects when people have learning disabilities, autism and possibly depression and challenging behaviour is inhumane and perverse.

I was subject to similar regimes in the 1970s and 80s in the old-style psychiatric hospitals – now mostly demolished.  I had anorexia nervosa and depression over many years.  I did have good and helpful treatment in other places but the behaviour modification treatments are the ones which still haunt me.

My first experience was very sudden and unexpected.  I  was in my room in a hospital when several members of staff, including the ward sister descended on my room.  They proceeded to put all my possessions, including books, knitting, paper and pens and cigarettes (no mobiles or iPads in those days) into plastic bags and started to remove them.  When I asked what was happening they told me I was to be put on a reward punishment regime.  I would be given chlorpromazine (a major tranquilliser) on a regular basis and fed 3 meals a day plus supplements.  If I finished a meal I would be allowed a cigarette.  If I put on weight I would start to get some possessions back.  I would have no visitors and would be confined to my room. I would have no talking therapies. There was no prior explanation and, horribly, the ward sister and one of the nurses seemed to be actually enjoying the process.  I spent 4 months in solitary confinement with nothing to do but sleep.  I gained 2 stone in weight.

I lost all the gained weight as soon as I left hospital.

During another admission, in another hospital, it was decided that I was too dependent on my parents (when you are ill a lot you don’t tend to have many friends). A registrar decided that I should have no visitors for 8 weeks and would not be allowed out or to take part in ward activities or occupational therapy.  The doctor would however talk to me every day.  The only other thing I was allowed to do was read.  During the 8 weeks I raided the small hospital library and read my way through the complete works of Catherine Cookson.  I am grateful to her for the reprieve they gave from total nothingness but I have retained a lifelong version to Catherine Cookson novels and films and shudder if I come across one!

I left hospital and took an overdose.

Neither of these experiences benefited me.  The legacy they have left me is that I hate bullying in all forms.  I hate the abuse of power which so easily happens in any institution when one group is given all the power and another group is powerless.  Anything that someone in the powerless group says or does can be interpreted by the powerful group members to mean anything that suits them.  Giving carers even more power by putting the tool of ‘behaviour modification’ in their hands increases the likelihood of abuse of power.  How much worse must it be for someone with a learning disability or autism.

To finish – another little memory – from yet another hospital.  I was feeling pretty desperate one day so knocked on the ward office door to ask for help. It was full of nurses chatting together.  When I went in they asked me to go out and knock again more loudly(I think it was supposed to make me more assertive), a second louder knock wasn’t good enough either and I was sent out a second time.  When I failed to reach the required loudness on the third occasion  I gave up.

I am so sad and appalled that these crude and destructive tools are still being used, and against the most vulnerable people.  This is one reason why I will continue to support #justiceforLB and the #LBBill and#justiceforallthedudes.