Learning Disability Week – Hate Crime and Hate Language

I know I’m a bit late to Learning Disability Week – which runs from the 20th June for.. well, a week but it remains a campaign and a group I have a great attachment to coming from years working with adults with learning disabilities before I qualified as a social worker.

The ‘theme’ if it can be called that, is a new campaign, called Stand by Me,  which is being run by Mencap to challenge and hopefully phase out hate crime which is targeted towards people with learning disabilities.

 

raphaelmarquez@flickr

Apart from, I hope, creating more of a stigma towards those who might seek out and target people with learning disabilities there is a focus on the ways in which crimes which are committed are dealt with by the police and the criminal justice system.

Mencap share some chilling but sadly unsurprising real life stories from people who have suffered from hate crime.

While accepting this is slightly different, I have had difficulties trying to pursue prosecutions for people who have dementia and who are the victims of crime and abusive situations due to the way that the systems are currently set up. I hope there is more attention paid to ways that these processes can be improved for everyone.

Hate crime is an offence which is committed against someone on the basis of their membership of a certain ‘group’ in society be that on by their race, class, disability, gender, age, sexual orientation, gender identity and good old Wikipedia, gives an alternate definition of ‘bias-motivated crime’.

To call something a crime indicates that (obviously) there is a criminal act that has been committed for example, a physical assault but I think the discrimination and the effect of actions of hate towards those who have learning disabilities have significant effects on the way our society perceives some members of our society.

For example, name-calling. Verbal and emotional bullying. Laughing and pointing. This might not count as a ‘crime’ but as long as it is acceptable, it may lead to criminal acts. Those who talk about criticism of the use of certain words being ‘PC correctness gone mad’ would do well to remember that with disrespectful thoughts come disrespectful words and disrespectful and flippant words lead to disrespectful thoughts.

The more we create divides between ‘us’ and ‘them’ the more vulnerable we are to dehumanising ‘them’ and it turns to just a step away from the acceptable or non-intervention in a ‘hate crime’.

So for me, it is a very important campaign but must not just be restricted to those who commit criminal offences against people with learning disabilities. It must also be targeted at those of us who use flippant and insulting language to describe people with learning disabilities.

Someone who describes their phone as being ‘retarded’ because it doesn’t work (yes, that’s a real life example from someone who should know a lot better), that’s the first step towards dehumanisation and degradation of people with learning disabilities and yes, I was accused of ‘political correctness gone mad’ when I challenged this but I maintain and always will that the connection between language and respect are inherent.

So targeting hate crime isn’t just about systems and criminal offences although that is absolutely essential to target. It is about the people around us, the words we use and the respect we afford to other human beings. When we treat people with disabilities as ‘different’ or ‘others’ and dismiss them and their needs, we allow hate crime to flourish.

Related articles

• Learning Disability Week- Hate Crime (newideasadvocacy.wordpress.com)
• Police ‘Ignore Hate Crimes Against Disabled’ (news.sky.com)

Undercover Care : The abuse exposed – A Review of Panorama

I sat down to watch Panorama yesterday and the trailers and name of the programme were something of a giveaway so I wasn’t exactly unprepared for what was shown.

Panorama had been alerted to abuse within Winterbourne View near Bristol, which is a private hospital run by a company called Castlebeck for people with learning disabilities and autism and according to the description on their own website

..  is a purpose designed acute service, offering assessment and intervention and support for people with learning disabilities, complex needs and challenging behaviour.

It can also provide a service for those liable to be detained under the Mental Health Act 1983. It offers a stable, structured and therapeutic environment and the support of caring and dedicated staff.

Winterbourne View, which has 24 bedrooms, offers the chance for people to progress to more community-based living as part of their ongoing rehabilitation, at their own pace.

Winterbourne View charges an average of £3,500 per week for a place. I wonder how much is spent on staff costs and training.

Acting on the information from a former senior nurse there who had been whistleblowing, Panorama sent in an undercover support worker (journalist) and some hidden cameras. I knew I was prepared. I knew we were going to see abuse but nothing prepared me for the actual footage that I saw.

I try not to engage in hyperbole but what we saw was purely and simply torture of adults who have needs which make them more vulnerable.  Physical restraint was used as a punishment and some members of staff were deliberating provoking residents almost as if it were a sport and they were playing at bear baiting. It made for uncomfortable and emotional viewing.

I worked for many years in homes for adults with learning disabilities before I qualified as a support worker and the lack of humanity with with the residents in the hospital were treated was almost physically painful to watch. The programme showed a woman being given showers fully clothed and being dowsed with water outdoors on a cold, March day until she was shivering profusely. They showed her being pinned under a chair.

In one of the most troubling pieces of footage, a girl is shown as she had tried to jump out of the window and the staff mock her attempted suicide and taunt her to ‘try again’ and ‘make a better job of it’ saying things like ‘do you want me to open the window more’ and mockingly telling her she would make a ‘splat noise’. Even writing it out is difficult.

There were other things – comments made, pin downs and the use of martial arts techniques which are, unsurprisingly, wholly inappropriate and this footage was shown to a specialist psychologist with the Tizard Centre who would respond with the same gut horror that you didn’t need to be a psychologist to understand.

The footage really spoke for itself and I wondered about the position of the undercover journalist who stood by and watched some of the abuse occurring. There is an issue of ‘greater good’ versus ‘personal responsibility’ so the argument would be that the programme itself was able to prevent future harm coming to the residents by being transmitted but he admits that it was difficult for him.   He says here

I was watching on the sidelines, resisting putting a stop to this (abuse) and blowing my cover. Simone was staring at me as she lay on the floor, staring at the only person not abusing her.

I could not save Simone on that day. I had to resist my instinct to step in. I was there to gather the evidence that could help save others from a similar fate – and Simone herself from future abuse

Some of the more difficult responses came later in the programme as the CEO of Castlebeck was interviewed and of course expressed disgust and surprise at the levels of abuse in Winterbourne View. A company statement is published here and alongside all the usual guff is an acknowledgement that the whistleblowing policy was not adhered to when an initial complaint was made by a staff nurse on 11 October 2010. The footage was filmed between February and March 2011.

I was more furious by the response of the CQC. The whistleblower also contacted them, you see with the allegations of abuse. He contacted them three times.

Winterbourne View had last been inspected ‘two years ago’. Is that the kind of satisfactory inspection regime that we have, Mr Burstow? Oh, wait, it’s ok, because the statement from the CQC says Burstow has authorised a sample of 150 hospitals receive random unannounced inspections. Woah. Only 150? Only a random sample? Why just hospitals for people with learning disabilities? If random unannounced inspections are seen as necessary to prevent institutional abuse on such a wide scale, surely they should be the NORM for everyone who receives a service via a service inspected by the CQC.

No, you see, Burstow (and the Labour ministers before him) seem to think that self-regulation is the way to go. The way the man from the CQC squirmed as he insisted that the paperwork had been in order at Winterbourne View tells a tale all of its own.

And as for the staff, four have been arrested to be charged under s44 of the Mental Capacity Act which makes it an offence to ill-treat or wilfully neglect a person who lacks capacity.

It also begs the question – where were the Deprivation of Liberty Safeguards? Were any of the residents detained under DoLs  – or the Mental Health Act for that matter (as the hospital was assigned as such to accept people detained) and if that was the case, shouldn’t there be additional checks. Would independent advocates provide a further check?

There are a lot of questions that remain and the main one is the way that institutional abuse can fester in a residential care setting. There are wonderful care homes and hospitals around. I see them and I worked in them and often the ethos trickles down from top to bottom. Staff who see other staff abuse residents can ‘join in’ to be accepted – it is a classic position of bullying and unfortunately sometimes people who enjoy this kind of power play are attracted to work in social care. There needs to be an environment that does not accept this and that stamps down on it immediately and that was the real failing of Castleview.

This was not about 4 rogue members of staff. This was about an environment that allowed them to abuse and for that the senior management up to the Chief Executive should be responsible. Where is the support and training for staff who have to work in stressful environments? Where was the supervision that would have stamped out some of the abuse.  That doesn’t excuse those who were responsible for mistreatment  but it draws interesting parallels with the sacking of Shoesmith.  Wouldn’t we be baying for the blood of the CEO of Castleview? Or perhaps because the abuse took place in a private setting there are different lines of responsibility.

I think we should look long and hard about how we, as a society, seek to push people on the peripheries of society, because of age, disability or capacity to the margins of society and people to provide care who are not regulated and not supervised.

When the regulator fails so substantially as to ignore someone who whistleblows explicitly, do we not see a problem the ‘system’ that is increasingly reliant on proactive ‘complaints’ to trigger assessments?

There is much to do and much that needs to be changed.

I wouldn’t say I enjoyed the programme, it upset me and it angered me but I think everyone involved in the sector should watch it.

It can be viewed here on the BBC iPlayer.

Whistleblowing

Earlier this week, Community Care picked up on a report from Public Concern at Work which related directly to whistleblowing in the care sector. It makes for chilling reading and displays the problems which are inherent in adult social care.

stevendepolo@flickr

As the article states

Public Concern at Work, which runs a helpline for employees who witness crime or wrongdoing in the workplace …  revealed figures showing half of all calls from social care were about the abuse of vulnerable adults. In half of all cases where other staff knew about a risk, they were too scared to speak up

When you put this in the context of the CQC abandoning random spot checks and initiating increasing systems of ‘self-regulation’ in care homes and you have an extremely dangerous combination.

The article goes on to give an example

In one case, a social care worker witnessed a carer hitting a resident across the back of the head. He raised his concern with his manager but no action was taken, so alerted the care regulator. In the meantime he found himself ostracised by colleagues after the manager had revealed the worker’s identity. A subsequent investigation by police and social services took place but was inconclusive. The care worker said he felt unable to return to work.

There are a number of things that made me audibly sigh when I read this. Firstly and perhaps most tellingly, it didn’t shock or surprise me. That is a sad indictment of the sector as a whole. I’ve worked in the adult social care sector for more years than I’d like to say and come from a background as a care worker in residential home. I was fortunate to work in a great home with a fantastic ethos but I know how easy it is to become socialised into careless models and how dictatorial some management regimes can be.  The other part was that the investigation proved ‘inconclusive’. Often they are when people close ranks and what does that say about the ways that abuse is investigated? Well, I make no secret of my disdain for the policies and ways that these investigations take place with little legal backing. Things are better than they were and I know locally great efforts are made to improve safeguarding procedures – indeed, a new London-wide policy has just ‘gone live’ but I hope the legislative procedures firm up.

Back to the report though, which Public Concern at Work publish here.

The organisation states that the largest proportion of calls that they receive come from within the Adult Social Care sector and relate to vulnerable adults (15% of the calls that they receive) and in their report ‘Speaking up for Vulnerable Adults : What the Whistleblowers Say’ they use some of the data gathered over an 8 year period to look at some of the issues raised to them by whistleblowers in the sector.  The report as a whole is quite short and easy to read.

My main concern is the lack of involvement by the regulatory authority (namely the CQC or its predecessor body, CSCI) and lack of involvement. The report takes a sample of 100 cases, 27 of which detailed physical abuse  and the respective care regulator (CQC or CSCI) was only involved in 12 of these cases which considering the role of the regulator and the seriousness of the issues raised, is surprising.

Even worse, the statistics related administration of medication where issues such as mixing up medication between residents, failure to administer medication or administering medication incorrectly – where only 3 of the identified 15 cases (from their sample) involved a regulator.

It’s worth reading through the relatively concise report. It doesn’t make for much cheer which is unsurprisingly given the subject matter but emphasises the importance for care staff who often are employed by private companies and may not have redress to a union for advice and support to be better supported by local authorities who commission their services and by the regulatory body (CQC) in raising concerns in a safe environment.

It seems obvious to note but the care worker ‘on the ground’ is the person most likely to be able to spot abusive practices in care settings and particularly in residential and nursing homes. This must be a resource that is utilised and they must be afforded protection through not only well-intentioned whistleblowing policies but well implemented and well known ones that are able to be drawn on and protect the workers involved.

As we move towards more direct payment funded personal budgets and home care settings change, the relationship and responsibilities of care workers and personal assistants that may be directly employed by service users rather than through agencies also should be addressed through policies regarding raising safeguarding (adult protection) alerts.

Until training and awareness around adult protection is as widespread as it is around child protection, we can’t afford to be complacent or make assumptions about what may or may not be reported.

Personalisation in Mental Health and Older Adult Services

Personalisation is a very broad brush term to describe the so-called ‘transformation’ agenda in adult social care. In very general terms it refers to the process of moving from resource-led to needs-led systems of service provision (just as the NHS and Community Care Act 1990 was supposed to do) but this time… with individual budgets.

The idea is one is it difficult to find fault with. Users and carers would have more control in choosing the type of care which was provided through having ‘pots of money’ either virtual or actual payments  and deciding how best they could be used.

The change was led, ironically, by the soon to be extinct ILF (Independent Living Fund) which was the forerunner of the Direct Payment system whereby money was put directly into the hands of service users to choose and buy their own support and hire their own carers (with substantial support regarding admin and regulation if necessary). It was a new way of doing things and it generally worked very well.

Then with the ‘Putting People First’ white paper, the idea was to be rolled out to everyone receiving a package of care from the local authority. Wonderful. We would be living in a world where patronising social workers wouldn’t be dictating that ‘they knew best’ and imposing care packages based on large scale contracts negotiated down to reduce the costs and people would be able to choose the services they wanted and the carers they needed and liked. It would all end happily ever after.

I was a great campaigner for direct payments. I saw a lot of people do extremely well from them. I also think a lot more needed to be done though in increasing the take up and levelling the parity of service provision.

It appeared to me that those best able to advocate for themselves or who had active and involved families got the lions’ share of the services and were able to cherry pick whereas those who weren’t able to access the best systems either though lacking mental capacity, through lacking the desire or just being so knocked out by disability/age or lack of family got the scraps left behind by the system. The contracts that had been negotiated by commissioners who never themselves would actually use the services of minimum wage carers who were overworked by the care agencies determined to slash costs in order to win these prized contracts.

Soon though, the announcement came that everyone would get ‘personal budgets’ for social care. Wonderful. That would level the playing field, surely.

It was quite exciting. For a time. Until we realised that the people the local authority were ‘piloting’ the system with where exactly the people that they knew the system would work with – namely those who had successful direct payments packages.

Now, in my time, and the only time I’ve done properly authorised and supervised research as a practitioner, so happened to be related to direct payments. I spent a few months researching the lack of take up of direct payments by older adults and adults with mental health needs.

Now, my research was primarily literature-based. I did no direct interviews (ethics committees take time!). There was substantial sources of literature available, even at that point.

So what was learnt from the research that had taken place at that time and how was this used to improve the service provision when personal budgets were rolled out?

It wasn’t. So we find ourselves in the same place years later.

That’s a very long background to my point this morning but I think it’s important to emphasise the context through which I read the SCIE report ‘Keeping Personal Budgets Personal : Learning from the experiences of older people, people with mental health problems and their carers’.

I read this report last week and as is the case in all the best research, it backed up, with evidence my own feelings and ‘hunches’. I like research that does that.

The main learning from the report is that the key to the implementation of a successful personal budget is both information and involvement of a professional. People wanted support with completing self-assessment questionnaires in general so while our local authority employers promised us (don’t worry, we never believed them for a second) that time saved in leaving people to complete their own self-assessment questionnaires is time we could use in ‘creative support planning’ actually, the SAQ can be a daunting document.

In my experience, it is extremely poorly drafted (possibly because the focus groups were very narrow) and I am almost embarrassed to give it out. It focussed heavily on physical care needs and asked particularly strangely worded questions about capacity which shows the author of the forms have no understanding of the Mental Capacity Act and the idea of ‘decision-specific capacity’. It reminds me (and service users I’ve taken it to) of a DLA form. Jumping through hoops and ticking boxes to get money is not dignified.

The SCIE research also emphasises the importance of having a consistent person available to take a user through the process. Again, less necessary when there is a someone who is high functioning or who has highly involvement family/carers but the resource distribution of support doesn’t create an equity for those who need more. Professional time is increasingly stretched and the time spent rushing through a SAQ and package of support is not respecting the principle of self-directed support. As professionals with heavy caseloads though and targets which are tracked and time-limited, it is hard to balance this ethically.

Moving onto the Resource Allocation Systems (RAS) which is the way that the self-assessment ‘turns into’ a sum of money – either real or virtual for the user to ‘spend onservices’. I can’t express my anger about the RAS system strongly enough. It is heavily biased against older adults. It is even more heavily biased against people who have carer support.  I don;t know how widely this information is known  but if you have a family member providing support, you suffer massively when the finances are pumped out of the ‘RAS system’. The more help the family member provides, the less money comes out. I feel this is immoral and short-sighted. It places additional stress on unpaid carers and pays no heed to preventative care.    Yes, individual cases can be argued but that takes more time and effort.

The we move to the support planning stage. You have the ‘virtual budget’ in  hand so what amazingly creative package of care can you create. Again, the evidence in the report shows that it is often information that is shared by the professional in the first place that leads to the quality of support planning.  Users wanted continuity of staff throughout the whole process of assessing and support planning so our local authorities great idea of commissioning organisations to help might miss this point – although that idea and those commissions fell through when the organisations they had commissioned were so overwhelmed with referrals they were unable to take on any more users. Oh, and the user groups that were commissioned? Physical and learning disabilities charities. Nothing for mental health or older adults. Surprise. Even though those were the groups least likely to get the support and planning needed.

There is so much in this report and it is worth reading if you are involved in any way in implementing personalisation in adult social care in the UK.

The sadly predictable thing is that I could have told the councils these messages 5 years ago but noone would have listened – come to think of it, I DID tell the implementation team 5 years ago and many times in between. They are so vested in this new system of delivery of services being ‘better’ that they are blinded to the vast swathes of people who are again increasingly sidelined and excluded from the positive thrust of the personalisation agenda.

Sadly, it feels like the lessons will never be learnt because the wrong people are being asked. No-one wants or is able to invest real money in providing better services and more flexible and easier ways of managing the service provision in the less engaging client groups.

It’s unfortunate that the agenda has sprung into life at a time when cuts are at the front of our communal minds. It has become too easy to see personal budgets and cuts in the same sentence when they were never meant to be.

The truth is that the whole system is failing those who need the support, advocacy and choice the most. You know, those elderly people with dementia who have care staff on minimum wage coming for 30 mins in the morning to give them a shower. There are lots and lots of them around.

I want to ask how is the personalisation agenda helping THEM? How is it helping us to help them? We are closing day centres because people can ‘group together and commission day services jointly’  but sometimes the purpose of a day centre is the company that you surround yourself with, the support of peers and not about completing a specific task or learning a specific skill.

More able, more active older adults may well use their ‘day services’ budget to go to the local bridge club or swimming pool – but how about those with advancing dementia whose carers need the respite that day services bring as much as the company and hot meal are welcomed by users. Are the local swimming pools and adult education colleges going to be suitable for all?

The idea of personalisation was the it would be something that would be actively chosen and engaged with and there is no doubt, it works very well for those who are actively interested and engage with their care services.

My concern is that the process has, again, run away with itself and left behind, far behind, those who cannot make decisions for themselves about their own needs and who don’t have family to advocate for them. They are left with the same ‘old style’ service delivery model of the cheapest agencies providing poor quality care by rushed carers on minimum wage. The difference is now the day centres are closing and the government are telling us this system works better.

The sad thing is, if they had read and understood the research that was available at the time regarding the take up of direct payments by adults with mental health problems and older adults, they would have learnt all these lessons and maybe put better systems in place. The cynic in me says they only wanted to see success and the same groups of service users suffer yet again.

One of the things that saddens me the most on a personal level, is that I was always a great advocate of the direct payment system. I plugged away with it and got some incredible results with specific service users.  I was the little pet of the direct payments team, explaining again and again to my colleagues who wonderful it was to be able to reliquish control and allow and promote user choice.

I wanted and was sure the system of personal budgets would be even better. It would be more inclusive. It would fix the faults of the direct payments system because, look, we had research to back up why it  hadn’t worked so well with these particular service groups (older adults and people with mental health problems).

All the research was ignored. Mistakes were replicated and exacerbated. If anything it is even more exclusive and inequitable than the previous system and no-one seems interested in listening to any of the real concerns and criticisms.

A great opportunity has been missed. Hopefully someone somewhere will actually read the SCIE research paper and think about making real changes in the systems of delivery and implementation. It could all have been done in advance though and that’s the true tragedy of the personalisation agenda.

Related Articles

• Respite, Disability and Personal Budgets. (fightingmonsters.wordpress.com)

Press, Perception and the Court of Protection

Having had to study the Mental Capacity Act in fairly great detail, I often have to turn to judgements made by the Court of Protection to extend my general legislative knowledge.

The Court of Protection has a number of functions that can get easily interwoven but generally, it makes judgements about issues of capacity.

It’s always interesting to me how the press report Court of Protection judgements as in general the court sits in private . It isn’t thought of very highly by the press – probably for the very reason that many of the cases take place behind closed doors – which is particularly unusual for a court in the UK. Indeed, it’s traditional journalistic byline seems to be ‘the-secretive-court-of-protection’.

There was a case this week which was heard which involved a pregnant woman with learning disabilities and a decision which was to be made as to whether she should be subjected to a sterilisation following the imminent birth of her child. It is very emotive and difficult as an ethical subject.

The Court decided, unusually, to open up the case to the media with the usual and understandable constraints of anonymising the parties.

What I found interesting was a comparison of reporting about the story before the case was heard and afterwards.

The Daily Mail is a case in point. On Tuesday Morning it published this piece.

They quote a spokesperson for Mencap

David Congdon, of disability charity Mencap, urged the court to ‘tread very carefully.’ He said: ‘It is a gross invasion of someone’s basic rights unless there are clear medical grounds and there do not appear to be in this case.

‘Using sterilisation as a form of contraception is totally unacceptable.

‘Years ago there were lots of cases like this but we hear of very few these days.’

Applications to sterilise women with learning difficulties can come from local authorities and do not require the backing of their families, he said.

‘The family’s position in these issues is not that great, because the person is an adult,’ he added.

‘They have to be consulted, but the application may have been made by social services.’

I can’t say I disagree with Congdon, it is a massive potential infringement of human rights to forcibly sterilise anyone but the weighting in the quote implies that the court disregards the family and it is a cunning and devious decision made by social services. Regardless of the fact that it is a medical procedure and any application would have to be made by the Trust employing the medics who would be responsible for carrying out the task.

The Telegraph use the same quote. As does the Independent which adds

Since the Independent’s battle to open up the Court of Protection, the paper has received numerous calls from people who allege that local authorities have been using the automatic secrecy governing the Court of Protection to severely restrict access to their loved ones. Because the hearings are largely held in private and no court listings are generally published earlier than the afternoon before hearings, it remains difficult to investigate and analyse such allegations.

You see, it’s easy to make one-sided complaints about a Court or a local authority when you only have a part of the story.

It’s easy to accuse ‘social services’ of being overbearing and evil when they are not able to construct any kind of counter-argument for the sake of the service users they represent. I say this having been involved personally in a case which could have been presented in a very one-sided way and would have been prime meat for the front cover of The Daily Mail – however the background of abuse within the family meant that what might have appeared to be callous actions had to be taken. We could never disclose that so would never have been able to defend ourselves.

But back to the secretive Court of Protection. The judgement or lack of it came yesterday as more information about the case was revealed.

It so happens that the woman’s mother was in favour of the sterilisation of her daughter. This is not a situation where the family have been side-lined by any means.

As the Mail put it yesterday

The woman, known only as Mrs P, broke down as she explained the drastic procedure was the only way to spare her 21-year-old daughter the heartache of having further children and being forced to give them up for adoption.

The daughter, known as P, already has one young son and is due to give birth to a girl today by caesarean section.

She was described as ‘sexually healthy and active’ but unable either to exercise restraint, or fully to comprehend the consequences of her behaviour.

Her mother told the Court of Protection that while her family would support these two children, they could not cope with any more.

She said: ‘I want the best for my daughter. We want to keep the children together as a family unit. But obviously we can’t keep on supporting more and more children.

Not really the evil social services taking action behind the backs of families that might have been implied the day earlier from the reporting.

It is an incredibly difficult decision to be made and as it happened, no decision and therefore no sterilisation order was made. The judge, ordered that at present there was no sufficient evidence to meet the criteria for such a drastic action under the Mental Capacity Act and while the best time to perform the sterilisation would have been at the time of the caesarean (which I believe was to take place this week), further hearings will happen over the next few months before a final decision can be made.

Clearly it is not a body that makes heartless and unconsidered judgements for the sake of it and loathe though I am to wander into the comment sections of Daily Mail stories, the difference between tone in the first story where the situation had been set up and has comments such as

‘All those in favor please show us your Nazi membership card as this is exactly what they did, So be very very carefull, many alive now do not understand the implications of what is potentialy a dangerous and devastating and far reaching precedent bought on by these council jobsworths. ‘

And

‘OMG, my blood is boiling reading this tragic story. What right do the council have to do this? How severe are this woman’s learning difficulties? Why not give her a contraceptive jab every 6 months, given at home if need be? Are social services and a representative of the secretive family court going to be present at the birth of the baby, whisk the baby away as soon as it is born and put up for adoption? If this is given the go ahead by the judge and forced sterilisation takes place, this is just the start. We will have crossed a line and the ‘Brave New World’ will begin. ‘

I know the Daily Mail comment section is not the place to look for rational argument and debate but we get a feel of the general perception that this is somehow a ‘council decision’.

After the information is shared in the second article, the tone of the comments change to

It’s sad but i have to agree with the mother. I think she has a very valid point. She will be looking after the children and it will break the WHOLE family’s heart should they have to give up any children for adoption. Also what happens if she falls pregnant every year till she can’t have any more children. The daughter clearly does not understand the situation because of her disability.

And

Unfortunately due to the Human Rights Act, this mother’s desperate plea will be ignored despite the emotional, psychological and physical turmoil this young girl will go through again and the stress and pain for her family. Very sad situation for everybody involved including the unborn baby.

Please don’t assume that I am ‘in favour’ of the sterilisation as a matter of course. I’m not but I do think the decision is absolutely taking place in the right arena where the considerations of P and her family need to be wholly taken into account under the law.

It’s just easy to see, in this case, how easy public perception and tone can be altered by reporting styles and language.

Related Articles

• Woman with learning difficulties could be forcibly sterilised (telegraph.co.uk)
• Court to rule on sterilisation of pregnant woman (independent.co.uk)
• Court to rule on sterilisation of mentally ill woman (independent.co.uk)
• Delay to ruling over sterilisation (independent.co.uk)
• Court to rule on bid to sterilise woman with learning difficulties (dailymail.co.uk)
• Disabled mother could be sterilised without her consent (telegraph.co.uk)
• Mother Sobs Over Plea To Sterilise Daughter (news.sky.com)
• Mother’s court appeal to sterilise girl, 21, with learning difficulties (dailymail.co.uk)
• You: Mother sobs at sterilisation hearing (guardian.co.uk)
• Sterilisation ruling: what is the Court of Protection? (telegraph.co.uk)

Capacity and Surgery

There is a case reported in the Telegraph today which I found interesting in relation to my work with the Mental Capacity Act – a generally very positive piece of legislation that has affected so many aspects of the way we work.

It is interesting partly because of the rarity of public judgements under the Mental Capacity Act (2005) so anything that comes up tends to be jumped on by practitioners as there is still a lot of vagueness that could do with some  legal clarification.

The case talks about a 55 year old woman with learning disabilities who suffers from cancer. She is afraid of hospitals and has consistently refused hospital check ups and treatment due to this fear. Initially she agreed to surgery however her fear of hospitals and needles led her to miss appointments and refuse ongoing treatment.  Sir Nicholas Wall, the President of the Family Division agreed with the application by surgeons to operate in his role as presiding over the Court of Protection.

It seems to have been established that the patient did not have the understanding of the impact of her refusal to access treatment and therefore the process of assessing capacity and the judgement that she lacked capacity to make a formal consent were clearly established.

The decision to sedate her in order to admit her to hospital and to carry out what will amount to major surgery without consent is obviously so drastic that the bounds of the Mental Capacity Act were being tested and quite rightly the case was brought directly to the Court of Protection to judge.

It is a balancing act that should be subject to external scrutiny beyond medical professionals necessarily and obviously not being party to all the details, it can be easy to draw conclusions.

From an academic and professional point of view, it is interesting in the way that the Court of Protection  has been used to make a judgement relating to health and welfare, rather than strictly financial matters as had been the case prior to the new legislation. The discussion about ethics and the morality of forcing surgery on someone who lacks capacity to consent is also healthy in the sense that although the decision has been made to go ahead with the surgery, the discussion allows the consideration of her position and human rights along the process rather than simply allowing a dramatic decision to be made on ‘common law’ principles.

Sir Nicholas stated that he released the judgement to assist with other decisions that might be made in hospital up and down the country. I suspect that when there is a need to sedate someone and remove them to hospital, it would still be necessary to go to the Court of Protection for clarification but it allows us to see what some of the thinking behind the decisions would be.

There are, of course, implications that run through A&E departments constantly. There is a difference too, between planned surgery and an action taken in an emergency to prevent the loss of life. Perhaps the real story to take with us is that if we have firm ideas about our wishes for treatment or the lack of it, an advance directive is the safest way to go.

Looking for beds

Something of a theme on my caseload at the moment is one of ‘delayed discharges’. I have three people in hospital medically ready for discharge and am waiting for residential or nursing placements to ‘pop up’.

It’s a warped kind of waiting game with no beds being available locally and people increasingly being shipped further and further out of London or at least towards the suburbs as the hospitals become desperate for beds and the lack of resources becomes painful.

One of the three has been on the waiting list for a local residential home for months. Another has a devoted wife who has constantly cared for her husband for decades through his progressively deteriorating dementia and another – well – the hiccoughs are proving to be way too many to detail succinctly..

But the result is the same – people who have strong local attachments, families and spouses are having to be placed outside the local areas.

It’s a subject matter that I have personally brought up again and again – going directly to commissioners when necessary but there is no aspect of my work where I feel ‘less heard’. Of course, placements can’t spring up overnight although some people imagine they can – and the brutal truth is that a placement usually only becomes available when someone dies.

That’s why the dementia residential placements locally have been so sparse – often they are taken up by people who could be very well physically and this means that those who need the beds are waiting longer and longer.

A part of the problem is that there was a feeling that ‘Extra Care Sheltered Accommodation’ – namely sheltered accommodation with additional 24 hour support on site – would ‘divert’ some people from residential care. In fact, the extra care sheltered properties, which we were told when they were established would be an ‘alternative’ to residential care, are not – at least in the local area I work (and it really could change from borough to borough) – not geared to meeting the needs of those who have 24 hour support needs. This is a particular issue at the moment as they seem to be incredibly reluctant to take anyone who doesn’t fit in to the ‘kind of person they want and would be ‘easy’ to manage’ making it more of an alternative for sheltered housing than for residential care.

I would love for there to be a widespread rethink of residential and nursing care provisions in the context of meeting individual needs. Prior to my qualification, I worked for about 7 years in a small group home for adults with learning disabilities and there was a massive focus on individuals and meeting particular needs. Of course, the funding is massively different level and that will always be the ‘sticking point’. There are vast amounts of funding available for younger adults compared to over 65s – simply because there is not the money there to provide the same levels of funding. Local authorities are not able to pay high care fees and the cheapest fees often involve large care homes. That isn’t to say they can’t involve personal care but more often than not they don’t – and certainly not where they need to be.

For every problem I find though, money is the answer – unfortunately – and in these times of shrinking budgets, we are left to provide what constitutes poor outcomes. I’d love to imagine a world where some kind of charity or donor could set up some smaller group-home like care structure for older adults too but the costs are way too high.. maybe that’s a project for the future..

Working in central London probably exacerbates the problem in some sense that the housing prices and land costs in the area that I work are particularly high – definitely favouring residential redevelopments for bankers as opposed to more substantial community resources.

But there is something incredibly cruel about ‘shipping out’ the older and the frailer to outlying areas. I know there is a move towards less residential care services but that isn’t the answer as there will always be some need for the provision.

Protecting Adults

A quick comment about this story about a couple with learning disabilities who were awarded damages of £100,000 against Hounslow Council which was subsequently withdrawn from them following an appeal.

They had been victimised over a period of time by local ‘youths’ who had been using their home as some kind of ‘safe house’ in which to take drugs and store stolen property.

Judges ruled Hounslow Council was not negligent in failing to look after the couple, who have learning disabilities…

The judges said they had “every sympathy” for the family, but the council was not responsible.

It was a groundbreaking initial judgement made back in May 2008 because Hounslow were charged with not adequately protecting vulnerable adults.

A social worker had told police the vulnerable pair were being exploited, but was informed that no action could be taken unless the couple complained themselves.

The council employee had also called for the couple to be rehoused.

Lawyers for the couple argued the social worker should have realised they were in danger and had them moved.

Hounslow Council took their case to the Appeal Court which ruled the council had no duty of care to the couple.

Sir Anthony Clarke, who headed the appeal judges, said: “There is an important difference between a case where children assert that a duty of care is owed to them and a case like this where the claimants are adults living in the community, albeit vulnerable adults.”

This really sums up the difficulty with the Safeguarding Adults procedures as they are at present. Adults, however vulnerable or lacking of capacity, are treated by the law in exactly the same respect all adults are – namely being responsible for pressing charges and for giving evidence in court in order to bring any kind of prosecution.

I actually have sympathy for the social worker in this case because our hands are very much tied. ‘Having people moved’ is not a straightforward process – unless perhaps we are considering residential or more supported housing. I have had exactly a similar argument with an older adult where she was exploited in her home and we were asked to consider residential care. This is a woman who would by no means be considering any kind of residential care placement if it weren’t for the exploitation but because there were difficulties relating to taking the matter to court to deal with the perpetrator, we were left with the option of her having to move out of the home she had lived in comfortably for 20 years into a more supported setting, simply to make her safe.

It makes me angry that we have to remove people from homes when it is others that are creating the difficulties around them.

I can only hope that situations like this highlight and inform the current debate about needing new and more effective legal mechanisms to protect vulnerable adults in the community.

Learning Disabilities and Health Care

It’s amazing how easy it is to become accustomed to writing on a regular basis. I miss one day and it feels distinctly odd! Habit or obsession, well, you can make that judgement! The reason I didn’t update yesterday is that I had an early morning (meaning before ‘normal’ working hours) assessment.  I invariably write up my posts first thing in the morning and apart from always feeling a little bit anxious before Mental Health Act assessments – this one in particular had been on my mind so I wanted a reasonably clear head.

There was though, one story I wanted to comment on, however briefly.

Namely, the scathing report published on Tuesday by the Health Ombudsman about institutional discrimination within the NHS relating to treatment of people with learning disabilities. Apart from being horrified by the events outlined in the report, I was also shocked.

I worked for about seven years in total in a residential care home for adults with learning disabilities. It was my first ever job (discounting holiday jobs!) and my first taste of the social care sector. When I started my social work training (during which I continued to work at the same home on a part time contract) I was absolutely sure I wanted to work in that area after qualifying. Of course, things happen and I am happy in my job (generally) now but unsurprisingly, the more I read of this report, the angrier I become.

Other sources have unsurprisingly picked up on it.

Mental Nurse asks how many of the problems related may come down to inexperience of medical staff at relating to and working with people who have learning disabilities as well as poor communication being a key to poor service delivery.

Campaigning for Health examines the particular case of Martin Ryan, one of those named in the report and the role of the Mental Capacity Act (2005) in defining a drip feeding as medical treatment which can be withdrawn

The Guardian publishes a picture gallery of the six people whom the report discusses. It is chilling to see the faces of those whom the service has so horrendously disregarded.

Mencap publish a response to the deaths of each of the six people named in the report.

To me, the story shows how far we need to go to understand and care for those who need additional support.

I was thinking about my own experiences in the time I worked in residential care. Generally we had very good relationships the local GP surgery. The GP would visit the home (which fortunately was about a 2 minute walk from the surgery) from time to time and knew each of the residents reasonably well.

On one occasion, one of the residents fell and broke her arm. She was admitted to the local hospital overnight – I don’t remember too many of the details but I seem to remember it involved some minor surgery. She was terrified. Hospital is where her father went to die. She was sure if she went to hospital she would die. I went to hospital with her – and I was allowed to sit with her through the night, on a chair, next to her bed. So there would be a familiar face. This was going back more than a few years, well over 10 years come to think of it.

I don’t know how ‘standard’ that would be, nor how many residential homes would be able to release staff like that (although, come to think of it, I think I wasn’t rota’ed to work at the time) – but I felt much more confident being able to sit with her and reassure her.

My only rather hollow hope is that these reports will lead to some real change, action and soul-searching to ensure that an excellent quality of care is delivered across the board.

Mencap are currently running a ‘Death by Indifference’ Campaign. The charity’s response to these particular cases is just the start of their campaign to ensure equality of service and sensitivity to the needs of those with learning disabilities.

Sport for all – revisited

Today the Paralympics end. But I’m sure you all knew that anyway. Among the fine athletics displays on show and the memorable moments – is the welcome news, reported in Community Care,  that the exclusion of learning disabled athletes is to be reconsidered by the International Paralympic Committee (IPC).

A press release by the IPC confirms that

It is envisaged that the inclusion of athletes with an intellectual disability in future Paralympic Games, beginning with London 2012, will be formally ratified by the IPC General Assembly in November 2009.

Community Care quotes the Chief Executive of MENCAP, Jo William’s response

“We are delighted by the announcement made by the IPC and INAS-FID on the progress made to lift the ban. However, there must now be immediate funding to make sure this happens and that as many sports are included as possible for athletes with a learning disability in future Paralympic games.”

MENCAP have been running a parallel campaign to focus on funding for learning disabled athletes and this is surely going to be a side-effect of the re-inclusion of these competitors to the international stage.

Britain has a fine tradition of disabled sports across the board – and this is reflected by the 102 medals, 42 of which are gold, which have been received in the Paralympics (to date) behind, only China. It is particularly good news then that the London Games will prove to remedy the omission of this one group of athletes eager to compete.

yoonhee_koo at Flickr

It is also quite right that the inclusive nature of the Paralympics is to return for the London games as the roots of the movement for parallel olympics for disabled athletes were  sown at the Stoke Mandeville Games in 1948, in the grounds of the Stoke Mandeville Hospital.

I have no doubt the news will bring great joy to wide range of people. Luckily, I’ll be there this time in four more years, to cheer them on!