The Right to Life

Thoughts on the implications of the UK government’s Coronavirus policies for autistic people and people with learning disabilities.

Like a lot of people, I’ve watched the emergence of the Coronavirus with a growing sense of horror. At first, I distracted myself with the knowledge that every year hundreds of thousands of people die from complications brought about by the flu. But it soon became clear that this disease is different – it kills with far greater efficiency – probably at least ten times more efficiently.

But what are the implications of this pandemic for disabled people and their family carers, in particular for autistic people and people with learning disabilities? Initial signs are worrying. The fact that Italian doctors have been making decisions about who gets to live and who gets to die has historically been the stuff of nightmares for disabled people. A history that is full of examples of how disabled people and people with mental health challenges have been triaged out of their right to life. Too often seen as an ineffective, less than optimal use of resources in times of crisis, and too often neglected out of existence.

These are of course unprecedented times. If we cannot curb the spread of the virus for long enough, in order to be able to develop effective treatments and a vaccine, the impact on our society will be drastic. The modelling of public policy interventions outlined by Imperial College London indicates that the potential impact of Covid19 could be devastating. From 500,000 dead in the case of the government taking no action to suppress the disease, through 250,000 dead if the government had continued to implement its original policy; to something hopefully significantly less if we are able to suppress and spread the outbreak over time through widespread social distancing and quarantining. How successful we are likely to be in that attempt will become evident overtime, but international perceptions of the UK’s ability to suppress the virus are low and according to a graph shared yesterday by Ed Conway at Sky News, the current increases in the number of deaths appear to be tracking Italy.

In the face of the scale of this potential devastation, it will be all too easy for the rights and lives of disabled people to become an after-thought, not so much as an act of deliberate policy, rather more as one of omission and ultimately exhaustion.

At the moment it is unclear to what extent the government believes that it will be able to respond to the individual needs of disabled people who contract Coronavirus, and in particular autistic people and people with learning disabilities. What is clear, is that over the coming weeks the healthcare system will be at full stretch and worse, and often decisions about life and death will be made in moments by practitioners who will be working way beyond the limits of their capacity and endurance. It is therefore unsurprising that the government is attempting to use the Coronavirus Bill to reduce the administrative burden on frontline staff so that they can focus more of their resources on fighting the virus and keeping people well. What is less clear, is whether the proposed changes will deliver what the government is hoping for and perhaps more importantly exactly what form of care, the government has modelled for autistic people and people with learning disabilities who contract and become unwell with the Coronavirus given that according the Imperial College Study 30% who show symptoms.

So, what kind of care pathways can autistic people and people with learning disabilities expect if they contract the Coronavirus? The honest answer to this is that we don’t know. I’ve just done a search on the Coronavirus section of the NHS England website which produced no results. The Public Health England Website has a range of guidance some of which is partly relevant. For example, the Guidance on Care in residential homes which outlines steps for how a person can be isolated in the home. There is also guidance on what to do if somebody who is living in supported living contracts coronavirus which essentially boils down to the following –

If the individual receiving care and support has symptoms of COVID-19, risk to their health and wellbeing must be assessed and appropriate action taken.

The guidance from the voluntary sector isn’t much more helpful. Mencap’s website had a good easy read summary document of what coronavirus is and what people should do up to the point at which they think they might have caught it. At which point it is suggested that they browse the NHS 111 website. There is, however, no evidence anywhere of a specific care pathway adapted to the needs of autistic people and people with learning disabilities once they go into hospital.

As things stand, we don’t know if carers or parents would be expected, or allowed, to accompany people with learning disabilities onto isolation wards in general hospitals. If this is not possible and a person cannot be left alone, what happens then? The only possible clue that I’ve been able identify comes from Simon Stevens urgent next steps letter –

Mental Health, Learning Disability and Autism providers must plan for COVID19 patients at all inpatient settings. You need to identify areas where COVID19 patients requiring urgent admission could be most effectively isolated and cared for (for example single rooms, ensuite, or mental health wards on acute sites). Case by case reviews will be required where any patient is unable to follow advice on containment and isolation. Staff should undergo refresher training on physical health care, vital signs and the deteriorating patient, so they are clear about triggers for transfer to acute inpatient care if indicated.

And in addition to that, the Coronavirus Bill which seeks to suspend a number of Local Authority responsibilities under the Care Act and which amends sections of the Mental Health Act.

The section from the Simon Stevens letter would seem to indicate that inpatient hospitals are likely to be the go to, treatment provider for autistic people and people with learning disabilities who need hospitalisation and who are unable to “follow advice on containment and isolation”. Which would tie in with proposed changes to the MHA Act which make it easier to detain people under the MHA and also make it easier to medicate people without their agreement.

In addition to this – according to an opinion piece published by Doughty Street Chambers:

Plainly the case for freeing up the time of health professionals including psychiatrists is unanswerable. The key changes are the loss of the requirement of the second medical recommendation in applications for detention; and the loss of the SOAD (second opinion appointed doctor – my parenthesis) requirement in the cases of those who did not consent or could not consent to treatment by medication after three months…

…The effect of dropping to 1 doctor will save significant person-power. There are 30,478 hospital admissions per year, an average of 2,540 detentions per month. Some MHA assessments do not result in a detention and there are no statistics on how many assessments result in a detention. This is a significant resource that could in the interim be deployed elsewhere.

If I am right and increased reliance on inpatient hospitals is what is being considered. And let’s be honest this is simply conjecture, but if I am right then it is probable that during the pandemic the number of people detained and treated under the MHA would increase significantly. In normal circumstances the idea of this happening and the idea of reducing the legal safeguards that protect people who are being detained under the MHA would be abhorrent. But in the circumstances that we are faced with, for some people, people who may struggle to cope alone with the trauma of an isolation ward, is there an alternative? But if this is what is happening the government and NHS England need to be upfront about it because laying the foundations and then springing it on people when they are unwell and in crisis would be beyond cruel.

But as I’ve said, this is just conjecture. At the moment, officially all we have is a vacuum. If the government wants autistic people and people with learning disabilities to survive this pandemic as well as any other community, it must ensure that it has a plan and it must ensure that people across the country are aware of what that plan is. Because if it doesn’t, autistic people and people with learning disabilities will once again be deprived of their rights – except this time it won’t be their freedom – it will be their right to life.

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Big tech, Mikey’s “phone” and the question of control.

There have been a number of issues that have been bothering me for a while and they all share a common theme or issue – and that is the question of control. More specifically who should control access to an individual’s views and experiences. Of course, the obvious and instinctive answer is that nobody should, people should be able to share their views and experiences themselves. They should have control of their own voice regardless of whether they use words, images, sign or gestures to express that voice. But the reality for many people with learning disabilities and autistic people, is that their voice or access to their views and experiences is often controlled by others, in particular the institutions in which they live or in which they are detained. The implications of this control are enormous. It suppresses people’s freedom, their right to be consulted with and it makes them vulnerable to coercion and abuse.

This issue came to light in one form, in a discussion about media coverage on people with learning disabilities and autistic people who are detained in inpatient hospitals, where the disability rights activist Simone Aspis had challenged the fact that the journalist had not spoken directly to the individuals themselves, but had instead spoken to their families. Rightful Lives, and I suspect most people who are campaigning for the rights of people detained in inpatient hospitals, are simply grateful for the coverage. But the fact is, Simone has got a point. It shouldn’t always be families having to speak up for their loved ones who are detained in inpatient hospitals. There should be greater links between self-advocate led groups and people who are detained and why aren’t journalists able to talk directly to people who are detained in inpatient hospitals, if those individuals have the capacity to consent and make the decisions that need to made?

The problem of course is the question of control. People who are detained under the Mental Health Act are people who have had their human rights suspended. Almost every aspect of their lives are controlled by the judgements and decisions of clinicians. With that control comes the ability to isolate people from the community and with that isolation comes all kinds of abuse – some prescribed and legitimised as treatment – others the expression of a form of hate.

Control and social isolation in the name of treatment also means that the right to have casual conversations with the people that you know is removed, what remains are visiting times and periodic access to phones. Perhaps that is one of the reasons why people who are detained are so dependent upon the advocacy of their families – because often the only people they are entitled to talk to and have involved in the details of their care are their nearest relatives.

So, to answer the question why aren’t people able to speak up for themselves or share their stories and experiences with their peers, or god forbid speak directly to journalists? The answer is the system won’t let them and when I say system; what I mean are the support workers, the nurses, the psychologists and psychiatrists, the commissioners, the civil servants, the politicians and the voters and the laws and regulations and the institutions that we have put in place. So, when I say system, what I really mean is us.

Big Tech

One of the other things that has been bothering me is the lack of investment on the part of big tech companies ( yes Google, Microsoft, Apple, Facebook, that would be you) into technology that can and could help to transform the lives of people with learning disabilities. My annoyance was triggered by a debate around the possible use of cameras in inpatient hospitals. Well when I say possible it would appear that in some settings it is already happening. And just for the record my annoyance doesn’t lie with the people who are calling for cameras to be installed it lies with the fact that the big tech companies aren’t even a part of this debate and I’ll explain why I believe that’s the case.

Firstly, again, it’s about power and control. The problem with trying to prevent the abuse of people in institutions (large or small) by installing a network of CCTV cameras is that you are effectively increasing the power and control of the institution. And as always it is the person living in an institution that is most likely to be subject to the abuse of that power. My issue with introducing a camera first approach to monitoring what goes on in any kind of institution, is that it takes away yet more of a person’s rights. It’s a surveillance hammer to crack a nut. Not only have people lost the right to freedom of movement, the right to freedom of expression and the right not to be pinned down by six blokes, they have also lost the right to privacy. But people do have a right to expect to be protected and this where the tech industry is failing them.
Most people will have noticed the increasing number of stories about big data, artificial intelligence, The Internet of Things and the ability of the tech companies to develop data and information about what we are doing. Technology is embedded in our everyday lives and as a result of that, the tech industry possesses enormous amounts of data about what we do and when we do it. Now I’m not going to argue about the rights and wrongs of the growing levels of surveillance that we are all now subject to. What I am arguing is that with the Internet of Things, AI and Big Data the technology exists to monitor the actions, behaviour and presence of staff without compromising the privacy of the people who have been detained or who are living in an institution. How it would work is complicated but the tech companies, government and the CQC have what it takes to crack this particular nut – the question is – will they?

Mikey’s “Phone”

It’s easy to think that all of this is just about governments and institutions. That control and isolation is something that takes place somewhere else and that supporting people’s ability to share their stories and experiences is an issue for others but actually like most challenges, they almost always find expression in our everyday lives as much as they do elsewhere. We’ve had a similar challenge with Mikey, albeit on a small scale.

Mikey is very fond of his extended family but he can get distressed if he has to travel, especially if that travel disrupts his routines. The nett effect of this, is that maintaining contact with his “family community” can be tricky. Especially given that he refuses to speak to anybody on the phone and doesn’t really seem to want to get involved in Skype. Mainly I think, because these are things that he cannot control, these are things that are being demanded of him.

Despite this we bought Mikey a Facebook Portal for his birthday. And for those of you who don’t know, the Portal allows you to video call people at the press of a button. You don’t carry them about with you like a tablet or a phone. They sit in the same place in the room and if you want to speak to somebody you walk up to it, press a button and you can. They are incredibly accessible, and the hope was that if Mikey wanted to speak to somebody who wasn’t there at the time, he could.

Well it worked. If I’m out and I want to ask him, and not the person he is with how he is, he will answer his portal (which he has now renamed- “Mikey’s Phone”) and tell me. And if there is something important that he needs to talk to somebody about he will call them. It’s still early days and at the moment he has only added a very small number of people to his list of contacts. But he’s in control, so that’s the way it should be. A thought that takes me back to the beginning of this blog.

Sometimes relatively small technological changes can change a system. What if rather than installing cameras everywhere in inpatient hospitals, or in any kind of setting for that matter, which would increase the power of the institution. Or allowing people to film with mobile phones in hospitals, which may undermine the privacy of other people in the setting. Imagine if people had a Portal or something similar, securely incorporated as a fixture of their room, so that that they always have a window on their community regardless of where they are living. On that Portal there would be a list of contacts, of people that they trust. Some of those people might be family members or parents, others might be friends or peer advocates, some might even have a contact at the CQC that they talk to on a regular basis, and some might even talk to journalists. Most of the time it would be up to them. Maybe then, we could move the discussion away from who it is that should speaking-up for people who are detained in inpatient hospitals and let people speak for themselves. It would also provide an opportunity for people who don’t have family working on their behalf to be contacted by advocates, the CQC and the public sector bodies who commission their care.

For people who are detained under the Mental Health Act, all of this would of course require a shift in culture on the part of the institutions and that is likely to be the biggest challenge. The institution’s ability to isolate and control the individual would be undermined but so would be the person’s vulnerability to abuse. Especially if done in conjunction with the introduction of some of the other technologies that I mentioned earlier. I believe that current and emerging technologies can play an important role in supporting the voice of people with learning disabilities and in protecting them from harm in a way that also protects their human rights. The question is, will the tech companies play the role they should be playing and will our government, our professions and our institutions be up for it?

Reasonable, Rights and The Tate Attack

I was reminded yesterday that sometimes it’s the things and acts and opinions that appear most reasonable that have the greatest potential to do harm. In an opinion piece on Jonty Bravery, Libby Purves wrote an article in the Times entitled: “Tate attack shows community care is in crisis”. In the article Purves argues for the continued institutionalisation of people with the most complex needs:

Scandals such as Winterbourne View are not inevitable. There are some well run, humane residential institutions especially small ones linked to relevant charities…

She goes onto suggest that if Jonty Bravery had been in such a humane institution, he probably wouldn’t have been given permission to go out into the community unsupervised.

At a certain level Purves’ article seems reasonable, especially when compared with some of the other coverage that Bravery’s actions have given rise to, and especially when we consider the horrific nature of those actions. But the reality is that the institutions needed to protect the community from people who pose a threat to it already exist, as does the legal framework needed to ensure that those institutions are used. Government initiatives to reduce the number of people in inpatient hospitals following Winterbourne View, have always recognised that some people need to be detained and were never about releasing people who pose a threat to the community.

Something went badly wrong in this case and none of us, including people like myself who campaign for the right of autistic people and people with learning disabilities to be a part of their communities, are currently in a position to answer the questions that need to be asked. Those questions must be asked, and all concerned must be ready to hear and act on the answers.

But what people should resist is the temptation to use the actions of an individual in order to justify depriving a group of people of their right to a place in their community. Purves’ central argument that the “Tate attack shows community care is in crisis” is not justifiable. Nevertheless, it is likely to be taken up by those who are uncomfortable with the presence of people who are different in their communities. We can also expect government ministers and some psychiatrists to use it to justify their lack of progress on Transforming Care.

The act of depriving people of their rights simply because they are identifiable as a member of a given community, is the kind of act that has underpinned untold numbers of human rights abuses. Too often societies have implemented legislation and maintained regressive social practices on the back of arguments made in response to crimes and tragic events. Ways of doing things that at first glance may appear reasonable, but which over time come to be seen for what they are, an expression of fear and prejudice. Such actions never do justice to the victims of crime, but they invariably serve a political purpose.

So, if recent articles in the media are any indication, over the coming months we can expect to hear the government justifying its failures in relation to autistic people and people with learning disabilities with phrases like “complex needs” and “protecting the public”, When in reality the only thing they are protecting is themselves.

Diversity and respect – An idea for Isabelle

There’s been a lot of talk about voice recently; about the importance of enabling the perspectives of different sections of the community. There have been discussions about how the power of families stifles the voice of people with learning difficulties. There have been conversations about wanting to change the tone of the debate about inpatient hospitals and the rights of people with learning disabilities. And a while ago I was posed a really interesting question by Isabelle Garnett. Isabelle wanted to know if I could think of a single idea around which people campaigning for the rights of people with learning disabilities could unite. Something that is realistic and achievable. It’s a great question and I’ve been thinking about it on and off for a while now and I think I’ve found an answer.

On the surface there is no single idea. People face a multitude of challenges in trying to live a rightfull life, and there are thousands of ideas about how the struggle for those rights can be fought. But despite this, it is clear that there is so much that unites us all, whether we are people with learning disabilities, autistic people, family members or friends, practitioners, providers, academics and commissioners, ultimately we are campaigning for or struggling to deliver the same thing – the human rights of people with learning disabilities and autistic people. So perhaps there is an idea, or at least a couple of ideas that we can all unite around, and those ideas would be accepting that there is diversity in approach and priority – and respect for that diversity.

In support of this idea we’ve decided that it’s time for us to launch Myownfrontdoor.net as a platform and online magazine on which people can share their work and their campaigns. It will be set up as a Rightful Lives project and it will be for everybody, from self-advocates, to families and friends, to practitioners and the organisations they work for, to senior civil servants and politicians. Its contributors will steer its content and future direction and the guiding principles will be diversity and respect.

If you’d like to share your work or campaign and would like to contribute to Myownfrontdoor.net then email me on MarkBrown@rightfullives.net and I’ll set up a login for you, and help you to get started.

Rightfullives – Success and Failure

The thing about doing something that hasn’t been done before, is that getting it right, so often seems to go along with getting it wrong. No matter how well something is executed there is always something that you haven’t foreseen. A bump in the road, a glitch in the Matrix, something that stops you from succeeding in quite the way that you thought you would. In my mind Rightfullives was and is a success. It did something that hadn’t been done before and strangely, probably couldn’t have been done in any other way than the way that it was. Certainly not with the resources that we had at our disposal. But along with that success is failure.
I’ll be honest, I’m gutted that things have turned out the way that they have. I won’t bore you with the details of how many hours it took to build Rightfullives.net as it stands today. The time that went into building the site, the effort that went into networking and social media, the thought went into putting the individual exhibits together and the remarkable creativity of the people who shared their stories, their interests and sometimes their pain. It is a privilege to have been able to be a part of it and thank you to everybody who has been a part of the things that Rightfullives does so very well.
Over the last 24 hours a lot of people have shared their opinion about what went wrong and what we should have done differently. How we should have ignored the opinions of one of the country’s most experienced self-advocates; alternating in almost equal measure with opinions stating how much we should have listened to her. Personally, I’m not sure that either was really the cause of what went wrong. Neither do I think that the partial failure of Rightfullives was really about whether or not self-advocates are better at representing the views and interests of people with learning disabilities than families. My answer to that would be that it depends on the individual and that the best way to move forward, is together.
On reflection, I think that the mistake that had the largest role to play in the partial failure of Rightfullives, was one that we made right at the beginning, and when I say we, I definitely mean me. And that mistake was not realising that in the end Rightfullives always had to belong to the people who contributed to it. It doesn’t matter who built it or who was on “the steering group” or who did this or that for it. It doesn’t matter if they are self-advocates, parents or practitioners – Rightfullives is its contributors and in my opinion, it was not realising that sooner which has led to the problems we’ve encountered.
So armed with that knowledge, I’m going to start on the next project, which again I’ll build for free. It will probably have a different name, but it will be a child of the things that worked with Rightfullives. It will give the contributors more control over the posts they share and allow them to upload their own stories, interests and exhibits. It will be designed to be as accessible as I can possibly make it. It will have a protocol and structure that will allow it to balance risk and safety. It will allow providers, commissioners and researchers to reach out to the community of people who will be a part of it. Above all it will be a platform for people with learning disabilities and autistic people, it will be a platform for their families and for the practitioners and organisations who want to be a part of it – and together they will own it.
I’ll need lots of help.
But first of all, I’ll need to find to find a number of organisations and individuals who’ll help to fund the expenses.

Branding Hope

We were sent some images for a new post for the Rightfullives website a while ago and in addition to the images themselves, the organisation supporting the campaign that a group of individuals had set up, had sent in their own introductory text for the exhibit that explained the centrality of its own contribution to the whole venture. It’s a classic example of PR and branding in practice, they wanted to be sure that the good work that was being done was credited to their organisation. And I guess they were successful, because whilst I can remember the name of the organisation that funded the campaign, I can’t remember the name of the campaign itself. It’s an example of the way in which people’s voices can be obscured by the needs of large organisations. And whilst this particular instance of branding may have achieved its corporate objective, the failure to make the people themselves the dominant voice and message of the exhibit, is self-evidently counter-productive. It’s an example of failing to get the right balance and the importance of not forgetting what it’s all about.

I was reminded of aspects of this when I saw the news that the Equalities and Human Rights Commission and Mencap are going to be supporting Jeremy (Beth’s Dad) in taking legal action against St Andrews Hospital. On the one hand I thought great, this is exactly what Beth needs and on the other hand, I wondered if it had the whiff of a PR exercise on the part of the two organisations. Now you might say who cares? If it works for Beth, then that’s great. The two organisations are doing what they are supposed to be doing and they are funding the action, so they have every right to a little publicity on the back of it and that’s fine. The problem, as always, is a little more nuanced than that.

The difficulty with service providers being activists and campaigners is well recognised. Sure, Mencap have a pro-bono legal advice service that provides great support to families in high media profile cases and sure there is no theoretical reason why it shouldn’t be available to individuals and families who want to take Mencap to court, but I’d be amazed if it has ever happened and in practice it probably won’t. But by attaching themselves to the campaign of the indefatigable Jeremy and Bethany, Mencap will gain important PR in promoting the idea that all people with learning disabilities and their families will have access to good legal support should they need it. And just to be clear I’m not saying that Mencap shouldn’t be doing this, I’m saying (yet again) that they should separate their campaigning and support services from their provider services, so that if somebody using a Mencap supported living service wants to take them to court using their legal support service there is less likelihood of conflict of interest.

The situation with the Equalities and Human Rights Commission is different. Again, it’s great that the EHRC are supporting Jeremy and Beth, and that support will add significant weight to the campaign. There is also the hope that any legal action may establish a legal precedent and if that does happen then it will have been doubly worthwhile. The difficulty, if it exists, lies in the reasoning that underpins the EHRC’s involvement in Jeremy and Beth’s campaign.

A couple of months ago, Rightfullives and hundreds of individuals and dozens of organisations wrote to the EHRC inviting them to take action on the situation facing autistic people and people with learning difficulties who are trapped by the inpatient hospital system. The Commission replied on the 5^th of November stating:

I have read your letter with care and concern and agree that it is entirely unacceptable that people who need care and support like Bethany, featured on the recent BBC Radio 4 File on Four programme, are treated in unsuitable and dangerous conditions. Recent coverage of deaths in ATUs has highlighted the grave breaches of human rights that can occur when people with learning disabilities and autism are held in these units.

As you know, we have recently held meetings with NGOs and lawyers and with individuals who have family members in inpatient units. We have listened carefully to their concerns and are now considering what action the Commission could take. The Commission has a range of potential enforcement powers and we will determine which would be most effective in tackling the human rights and equality issues that arise in light of the evidence that we have received so far. We are grateful for your letter and will take your suggestions into account in deciding the best way forward.

I will make sure you are kept informed about how we decide to move forward

As yet the EHRC haven’t committed themselves to making this issue one of their strategic priorities and we don’t know if the action that they are taking in support of Beth will end up becoming part of a strategy and a series of actions designed to confront this issue head on, or if it’s a single action that will have the dual purpose of, supporting Beth and Jeremy, whilst at the same time making it appear that the EHRC are doing their bit to support this community’s human rights by supporting an individual family.

The appeal of this latter approach and the temptation to use it is clear, by supporting a campaigner who is as effective as Jeremy, any organisation is likely to achieve maximum media impact with minimal input from themselves. And whilst none of this should matter to Beth and Jeremy, it will matter to the thousands of others who are currently struggling with the inequities of the current system of support, of which inpatient hospitals and the abuses that are inherent within them, are just a part.

So, if the EHRC are thinking of sitting back and letting everybody else do their work for them, then please don’t. The failure of Transforming Care and the ongoing human rights abuses of people who are detained in inpatient hospitals demands system wide change and system wide action. It demands that the EHRC does its job and that all of the organisations involved, take a long hard look at themselves. The ongoing abuse of people’s rights demands that every organisation involved in Transforming Care takes responsibility for the part they have played in the lack of progress and most importantly, that they do what it takes to put things right. Because no matter how much the different organisations might want to use individual stories to brand themselves as champions of hope, the truth of it is out there, in their collective failure to deliver meaningful change and the silent abuse of thousands.

Embracing Failure and Changing the System

I was talking to my sister the other day about being a parent. About how it doesn’t really matter how hard you try to get things right the only inevitable thing about parenting is the amount of stuff you’ll get wrong. And all you can do is your best and it doesn’t matter how many books you’ve read or classes you’ve attended, we will all make mistakes and the harm we do, or don’t do, in making those mistakes, will so often simply be a matter of fortune or a function of the speed with which we recognise or admit that we’ve got something wrong. And it struck me that there are parallels in that.

There has been a lot of discussion recently, some of it involving me, about the actions of powerful organisations working with autistic people, and people with learning disabilities. And I’ll be honest, it’s a subject around which I feel particularly torn, and around which I am particularly inconsistent. On the one hand – in a system that appears to systematically function to undermine peoples’ rights and well-being – it would be wrong not to hold the most powerful organisations operating within that system to account for their failings. On the other hand, I am uncomfortable with the idea that an organisation has to be perfect, or not guilty of certain of certain kinds of mistakes, in-order to be viewed as a good and approved of organisation.

In truth there are no perfect organisations, just as there are no perfect parents. At one time or another every single organisation that works with autistic people or people with learning disabilities will harm an individual, or individuals, in their care. The thing that will differentiate between them, is the willingness to search for their failings and speed at which they recognise that they have got something wrong.

But unfortunately, there are some organisations that are totally indifferent to the idea that they might be more effective if they did somethings differently. Or that the unshakeable faith they have in the way that they do things may actually be harming the people they are meant to serve. Yet even these organisations will be full of people who care and who fervently want to do the right thing. In contrast to this there are other organisations who will treat every mistake as if it were a wound inflicted upon a person they love, and whose instinctive response to failure is to embrace and protect the well-being of the people in their care rather than the reputation of their organisation.

In one of my recent tweets I asked if people thought it was possible to change the system without Mencap. There were a range of responses, most of them negative with some people thinking (including me) that they would never change and that their dominant position within the system would need to be replaced. And others who felt that they would be more responsive and more able to advocate for people with learning disabilities if they separated their campaigning activities from their work as providers. It’s likely that either of these options would have a significant impact on our collective ability to transform the current system of provision and with it the everyday lives of autistic people and people with learning disabilities or difficulties.

But the reality is that in its current form, Royal Mencap is an organisation that has a dominant position within the sector and an unshakeable faith in its current strategies. An organisation that has systems in place to learn from its mistakes without the compassion needed to admit to them. It is an organisation that will campaign for and support individual families, whilst at the same time it is unable to challenge government because of its role as a provider and its dependence on local and national government budgets. And because of that dependence on government, because of the failure of its leadership to recognise and embrace the mistakes they are making, ultimately Mencap will fail the people they are meant to serve and they will fail to force the change we need. Which is a shame because there are millions of people with learning disabilities and thousands of employees and supporters who deserve so much better.

Can we change the system without Royal Mencap? We can but if recent history is anything to go by they’ll try and take credit.

Does it make a difference?

It’s been over a week now since we launched Rightfullives.net and I think it’s fair to say that things have gone pretty well. The site launched on time, we had well over 30,000 page views in the first week, it didn’t crash, people seem to like it and most importantly, for me at least, it does justice to the amazing exhibits and contributions that people have sent us. Not bad on a budget of £0.  But a couple of nights ago Mark Neary went and ruined it all 😉, he wondered on twitter whether or not the site would make a difference and there is a part of me that wonders if he may have a point. Frankly, the system is so intransigent, so good at exploiting the good will of people who are trying to make a difference, so skilled at the dark art of insincere collaboration that it’s difficult not to wonder. But deep down, in the end the optimist in me refuses to let go.

On the surface Rightfullives is about the human rights and the humanity of autistic people and people with learning disabilities or difficulties. When we put out the call to action this was the theme that we invited people to contribute to. It’s a subject that speaks to the experiences of thousands of people and their families, and to many of the practitioners who work with us. In this, I believe that Rightfulllives helps people to raise important questions about the status of their rights and whilst we cannot know where that discussion will lead, the fact that it acts as a platform for that, matters. But I think that Rightfullives matters for other reasons and please excuse a bit of navel gazing while I explain why.

About 8 years ago now I began work on a full-time PhD at Brighton University. The title of my research proposal was “Representing the voice of severely learning and communication disabled children and young people” and the purpose of the project was to research and represent the communication and experiences of people with severe learning disabilities. The idea was, that I’d use a multi-media approach to find innovative ways of representing those experiences and central to the project’s method would be the “knowledge and experience of the people who know the young person well”.

After about 14 months the project still hadn’t gone to ethics. Difficulties in navigating an ethics process that was tightly shaped by the requirements of the Mental Capacity Act meant that I spent an inordinate amount of time trying to construct a consent process that fully respected and supported peoples’ ability to make their own decisions, in a system that tended to want to see capacity in a very black and white fashion. People either had the capacity to consent to research or they didn’t. Anyway, in the end my responsibilities as a carer, stress and a discomfort with certain aspects of academia meant that I walked away from the PhD although I’m not sure I ever really walked away from the project.

Fast forward to three years ago when Mark Neary and I met at a Learning Disability Today Conference and it was there that we first had the idea of creating an online conference/exhibition that would be accessible to people with learning disabilities.  For a long time it remained just that, an idea. 7days of Action and A Trade in People came and got in the way of the idea, and in the aftermath we all fell out so it wasn’t until some-time early this year that the idea for an online exhibition was re-suggested – probably by Mark – around the ever relevant theme of human rights.

Since then the idea would begin to take form, shaped as much by Julie Newcombe’s diplomacy and compassion; as Mark Neary’s belief in the importance of human rights and the struggle for people with learning disabilities to be recognised as fully human; and my semi-subconscious wish to find ways of representing the experiences of people with learning disabilities. One of those occasions where individual motivations of compassion, rights and voice coalesce into something more than the sum of the parts.

But will it make a difference? When struggling to change a system that seems to have the inertia of a super tanker, will anything, that any of us do, actually make a difference? Whether you are talking about Rightfullives, or the continued efforts of organisations like Respond and Bringing Us Together, to keep making the case for partnership working and collaboration. Especially when we ask that question in the context of the data that the BBC published on the significant rise in the use of restraint in NHS Inpatient Hospitals and the harrowing detail of File on Four’s – “Transforming Care – is it working?”

The honest answer is that we don’t know. We don’t know if Julie’s compassion and Mark’s faith in the humanity of the legal system will ever be rewarded. We don’t know if Katie Clarke, Noelle Blackman and the hundreds of other people who work in this field, will get the commitment that they deserve. And for that matter we don’t know if Anne Webster, who has worked tirelessly on behalf of people with learning disabilities for years and her relatively new apprentice Ray James and everybody else working on behalf of people with learning disabilities at NHSE, will ever get the support from Simon Stevens and Matt Hancock that they are probably fighting for.

But Neil Crowther wrote a blog a while ago entitled “Moving Beyond A Human Catastophe” and whilst I didn’t agree with all of it, I did really like the ending:

So, in sum, I would advise that our next steps should involve:

Looking forwards, not back…

…Advancing solutions, not just highlighting problems

Putting disability at the heart of the debates shaping our collective future

Developing a positive story of change

And striving to ensure that hope wins over despair.

Rightfullives is our contribution to that. We hope it will help people to tell the stories that are hard to hear, and it will help share the joy and inspiration that is at the heart of so many people’s lives. And to ask again will it make a difference?

I don’t know – maybe we are asking the wrong people – maybe we should ask Ben and Paulette and Alexis and the guys from Heavy Load or maybe we should just listen to what it is they’ve got to say because from what I’ve heard so far, there is joy and inspiration and hope in that.

 

Mikey’s Teeth and the 10 Year Plan

I seem to have spent a lot of time in hospitals recently. Between various family members being unwell, a couple of operations and my step son dying, I’ve seen much too much of the workings of the NHS from the wrong kind of perspective. And last week there was more of it, Mikey was going in for day surgery to have some work done on his teeth. The last time he’d had anything done he’d been a child, there had been problems with the pre-med and in the end, we’d had to physically restrain him to get the mask on his face. That was then, and I think it was fair to say that neither I, nor his mum were looking forward to going through that again, especially considering the fact that he’s a couple of feet taller now and an awful lot stronger.

It was in the run up to this and whilst working on the Rightfullives exhibition that NHS England announced that learning disability and autism was going to be one of the priorities in its 10 year plan. It’s great news but it kind of washed over me a bit. Getting people out of inpatient hospitals had been a priority once, as have a whole range of other things like learning from deaths, patient safety and Duty of Candour. Talking of which I wrote to NHS England back in May asking for the minutes of the Transforming Care Delivery Board, but nobody bothered to reply. And for those of you who don’t know, the Transforming Care Delivery Board is (or was) the board set up to have oversight of the delivery of Transforming Care. It appears to have stopped meeting a while ago – which is one of the reasons I wanted the minutes.

Anyway, I guess the reason I’m not overwhelmed by the announcement is simply that we’ve been here before. Politicians make promises, senior civil servants draft plans and less senior civil servants, and practitioners try to implement them, in partnership with “service users” or “people” as we are sometimes known. As we know the promises of politicians aren’t always what they should be and traditionally it has been the job of senior civil servants to turn those promises into some kind of workable plan. And even if they’ve known that the politician’s promises can’t be delivered with the resources that the politician has made available – the plan has nevertheless been drafted (preferably after appropriate amounts of consultation, participation and collaboration have taken place) and handed over to less senior civil servants and practitioners to implement. And as the less senior civil servants have struggled to deliver the plan that can’t actually be delivered, the management of the gap between the promises of politicians and deliverability of plans has been turned into a new art form.

Government departments invest increasing amounts of time and energy into controlling the narrative around the services that are provided under their direction. Good practice, expectation management  and policy announcements themselves are used to shape peoples’ perception of what is being done for a particular community. If we take the recent bad publicity that NHS England has had in the media – ranging from the stories of people in inpatient hospitals, inquiries into the deaths of individuals and the publication of data on health inequality and premature death. NHS England barely responded to the publication of the Learning Disabilities Mortality Review and in relation to the poor progress of Transforming Care Ray James National Director of Learning Disability at NHSE has stated that if the 16% reduction in inpatient beds had happened elsewhere in the NHS “people would be trying to learn from it”. This kind of expectation management has been accompanied by the talking up of pockets of good practice like STOMP, the increasing employment of people with learning disabilities at NHSE and Care and Treatment Reviews.

In truth we have little idea of the reality of how things are for people with learning disabilities or autism in our communities, even though there is much that NHSE knows but does not share. As families we have personal evidence of cuts to services – we know how bad things have to get before we qualify for support and we know how rarely people with learning disabilities are provided with the support they need inorder to be able to live ordinary lives, in their own homes in their own communities. But we also know that there are things that make a difference. There are organisations and practitioners who go the extra mile to make things work despite being given plans that don’t stack up and budgets that are self evidently simply not enough. We know that these people, working in our local communities, somehow take those plans and the policies and do their very best to make reasonable adjustments in unreasonable circumstances. Which was something I was reminded of last week when Mikey went in to have day surgery on his teeth.

As I said we weren’t looking forward to it. Would we be able to get him to agree to each step of the procedure? Would we be given the time and space to allow him to overcome his anxiety and ultimately would we need to restrain him inorder to get the work done. I won’t go into the details of what happened, but I will say that the clinicians involved were all able to develop a rapport with Mikey. They adapted the way in which they approached the procedure so that each step was more likely to be consented to and less likely to cause distress. Overall it was extremely successful, and it worked despite the fact that Eastbourne DGH has only just come out of special measures and despite the fact that the hospital is still in financial special measures. Somewhere along the line someone made the decision that despite the cost, despite the loss to their “productivity”, they would make enough experienced and well trained staff available and they would give them enough time and space so that Mikey’s teeth could be sorted out in a way that would cause him the least distress. And just to give you some indication of how successful they were, his memory of the day was teasing the nurses and getting hiccups before the operation.

As NHS England draws up its plans to make learning disability and autism a priority for the next 10 years, I hope they recognise that it isn’t just about changing culture and the sharing of good practice. It is also about having a plan that is coherent and funded and transparent; so that we all know who is doing what and how they are doing it. A plan that allows managers to give practitioners the time and space they need inorder to be able to include people with learning disabilities and autism – in a way that promotes long-term access to healthcare and that minimises distress. Above all I hope that the political commitment to this plan is genuine and they aren’t just using it to distract us all from the bad press they’ve been getting; and that in 10 years’ time I’m not looking back at the outcomes of this particular policy initiative and wondering what went wrong and how we could have let ourselves get taken in – yet again.

The Problem with Parents

I was reminded of Phillip Larkin’s poem “This be the verse” this week – and for anybody who hasn’t read it – it’s the one in which he swears a lot and blames parents for everything that is wrong with people. The reason I was reminded of it was because on Wednesday morning Mark Neary resigned from the badly named curating group of the forthcoming Rightfullives exhibition. Which is a shame because let’s be honest without him it just won’t be the same – but I’ll come back to that.

(Click here to download the easy read version of this blog)

Anyway – his resignation came about as a result of an online “discussion” he’d been having with Simone Aspis who felt that the curating group should have more people with learning disabilities on it and that she’d would help identify some people and organisations that we should work with. The offer was refused – on the grounds that the group is already sufficiently neuro-logically diverse – after which Simone went on the offensive and began to attack the project and a number of people who are associated with it. I am not going to go into details of this because Simone is entitled to her opinion and a lot of those opinions are opinions that I share. But I would like to clarify a couple of issues.

The first issue relates to the question of resources. I believe that at some point Righfullives has been compared to Mencap and some of the other larger charities. This is funny, because Mencap’s head office will probably spend more on tea and coffee today than we have available to run the entire exhibition. This is because Rightfullives isn’t a project in the formal sense of the word it is simply a few people getting together to create something that will allow people with learning disabilities and others to share their experiences, stories and work.

The second issue is more serious. Are we guilty of being in breach of the civil rights mantra -Nothing about us without us; or even worse are we – the small group of families who are putting this together – guilty of paternalism towards disabled people. It’s a fair question because as Larkin points out there is nothing more damaging than the good intentions of parents who will do their best but who will inevitably fail to live up to everybody’s expectations.

The answer to both aspects of this issue depends upon what you see as the key part of the exhibition. Is it the mainly administrative work that is being done by Mark Neary, Julie Newcombe and myself, and the advice that is being given by a small group of friends that will help us to deliver the framework on which the content will be delivered or is it the content of the exhibition itself. To use an analogy: what we are providing are the blank sheets of paper on which other people will create their own content. There are a few things that we won’t allow and we mainly won’t allow people to say anything that is likely to get them into legal difficulties; but apart from that there is going to be remarkably little curating going on and an awful lot of admin, and an awful lot of coding. Which is why the use of the term curating is unfortunate and which is why I am conveniently forgetting the fact that it was probably me that first started using it.

In truth allowing for technical constraints and the suggestion that it’s about human rights – the form and content of the exhibition will be determined by the contributors – and so far people have been very creative in how they interpret the brief – so it is difficult to see how what we are doing is controlling the voice and freedom of expression of those who are taking part. It is not just ABOUT people with learning disabilities or autism or both – they are its foundation and its essence – as are their families and the practitioners and researchers who support their right to a rightful life.

I hope we are not being paternalistic in the way in which we are approaching this, but I do think we have been sloppy in our use of language. We have used the language of projects and government to describe what we are trying to do, when in reality what we are doing is far less formal and structured and above all far less well resourced. It is dependent upon the hard work of people who aren’t getting paid, who don’t have budgets with which to pay for people’s time or expenses and who have to know each other well enough to be able to deal with the stresses that organising such an event entails.

Like everything that parents do, what we are doing is imperfect. There will be those who will see it as an opportunity to share their views and interests and some who will not. It’s up to people to decide whether or not they want to take part or stand on the side-lines and criticise the exhibition and the people who are making it happen.

As for Mark Neary resigning because he feels he’s damaging the reputation of the exhibition – no chance Neary.

 

The problem with parents easy read