This blog post was written by Kaliya Franklin and Gary Bourlet and was originally published on 01.06.15.
Earlier this year the Coalition government published a Green Paper.
The easy read version of the Green Paper was called ‘Making Rights Better and Listening To People’.
You can read it here.
A Green Paper is where the government talk about ideas which they think might help people if they were law.
A consultation is where the government ask people to tell them what they think about those ideas.
People First England did a detailed consultation response to this Green Paper.
This is what we think…
No Voice Unheard, No Right Ignored – People First England’s response to Easy Read Consultation
Our response has been written using only the easy read version of the information. We chose to do this because we believe anything concerning people with learning disabilities should be fully accessible to people with learning disabilities. It is very welcome that there is an easy read version of the consultation available, but disappointing that it lacks sufficient information and in places is enormously confusing in a way the full version is not. Unfortunately this reflects our overall view of No Voice Unheard, No Right Ignored which we find a somewhat disappointing and ineffective solution to the serious and extensive situation facing disabled people deprived of their freedoms by the state. We welcome some of the suggestions included in the green paper, but believe that if the government is serious about addressing the widespread abuses committed within the ATU system then only a properly co-produced, rights based, disabled led response will suffice.
It’s colourful – stands out when you read it. User friendly. Looks good on the page.
It’s mostly bullet points. The problem with easy read is that people think it’s about putting less information in and it’s not, it’s supposed to be about making it jargon free. There isn’t really enough good information in the easy read version to enable people to write good responses.
There’s loads of bullet points but not much detail under those bullet points. For example, about what being part of a family means, how are you going to make it happen etc
12 weeks is not long enough for self advocates and our organisations to be able to respond properly to this consultation. Most local groups meet only once a month, some are every two months. It depends on the area. If you think of say Dorset, people come in from all rural areas and that’s difficult for a lot of people to do it every week, unlike say London for instance where it’s more accessible and transport links are better.
I don’t think in this green paper they’ve put in anything about transport. Transport is important if you’re going to get people out and about. The use of buddying, that sort of thing. That’s important because you can’t get people out if you don’t build a proper life in the community and transport is very important if you want people to socialise.
From the easy read version, I suppose it means this Green Paper applies to everyone with a learning disability, autism or mental health issues. But it doesn’t really say if that’s the case or not.
I didn’t see anything about epilepsy in there. You notice these things because you have them yourself. How you manage people’s epilepsy is very important for getting them out of hospital placements.
You need to explain all the different types of institutions – it’s not just long stay hospitals or ATU’s, what I’m trying to say is getting people out and independent not keeping them in and dependent.
Living away from home in the past
It’s understating the case to say it was bad. A lot of people lived and died in these places, not treated well is not the half of it.
They say most of the institutions and long stay hospitals have been closed. But as someone with a learning disability it doesn’t feel like that. Institutions are everywhere. It’s not just about buildings, or what they are called. And they’ve still got the old workhouses – they call them day centres now! Originally those day centres were in the grounds of long stay hospitals.
We are a bit worried that the green paper is assuming we have already got rid of most institutions. This isn’t how it is seen by disabled people.
The whole idea of the green paper doesn’t feel like it’s come from disabled people. It feels like it’s the ideas of professionals, politicians and maybe families. User led is when people with disabilities and groups of disabled people decide on the agenda and priorities. Those people are more experienced because they’ve been through the system, they are experts by experience. We need more of that. It would have very different ideas in it if disabled people had led.
That’s being nice about it. I think Thomas’s (Rawnsley) mum would say a lot more about that, I think she would say it’s more than not good. They should experience what it’s like living in these places – I think saying not good is insulting.
It makes it look like it’s not that bad. You’ve got to be so careful when you’re explaining things like this. It’s like giving the wrong information and the wrong advice. And you have to take, you have to be the person to take responsibility for that. The government need to be responsible for that. Anything that goes wrong, they should be responsible for it. The government need to make sure that the people doing the easy read get their legal information right – they need to work with the organisation doing the easy read to make sure they understand the law they are trying to explain.
Leaving this to the next government is mostly passing the buck. There’s no collaboration between the political parties to make sure this happens. That would be better for people all round if all the parties could agree on this instead of one party in government.
They should have put disabled people would like to have the same rights as everyone else. Not a lot of disabled people seem to have the same rights as everyone else, it’s like we are going backwards. I would like to see disabled people have the same rights as everyone else, civil liberties and all that sort thing. They should have put in the UN declaration on disability. Only some disabled people don’t get all their rights. Some disabled people get more rights than other disabled people. I suppose as we know that people with physical disabilities have shouted more louder than people with learning disabilities, autism and mental health issues.
Having a green paper which aims just at people with learning disability, autism and mental health is separation. It sends a message that we are different. It sends a message we’re different from everyone, it’s not equality. It should be like Equality Act and cover everything. That would send a message that we are all equal because we’re human, like the Equality Act does.
To me, when I see well being I think of things like going to the well man clinic. It makes me think of things which are done to make me healthier. It covers a lot of things, good well being means community, safe, nice safe home. It is really important to make sure people don’t have the stress of the job centre – having to fill in lots of complicated forms is not good well being. To achieve good well being we need to look at how the benefits system works and make it easier for people with learning disabilities. Well being means reducing the stresses of life – the benefits system is very stressful for people with learning disabilities and it doesn’t have to be.
I’m all for good education and training, but there must be an area where people can go to for extra support. Things like helping people with learning disabilities learn to read and write better for themselves. Especially at school leaver age – that could be something that helps people to transition. A lot of people worry about where they fall in to children’s or adult’s services and they don’t fall into either category. Instead of going on to a day centre they could go to college, university, FE college. We want it to be an expectation for people with learning disabilities that it like it is for everyone else when they get to the end of school. People expect to have an adult life, get a job, an apprenticeship, go to college or university. We think there should be the same expectations for people with learning disabilities to transition into the same bits of adult life that everyone else expects to.
Self advocology – that means self advocates teaching other self advocates to be better at self advocacy
There’s been a lack of choice over where people want to live, rural, urban, coastal – they should be given all those types of choices. It depends on their age group and their individual needs as well as their disability. Some people like noise and cities some need quiet and peace. Housing’s always a problem because there is not enough of it. In the end people need to live safely, that’s the thing.
When people in authority talk about choices, what they really mean is their choice. A friend of mine had a social worker and he described it as they were snooping around his flat, looking into drawers for papers and things without his permission. What we are worried about is that choice usually means someone else’s choice for us, not our actual choice. Part of our make up as human beings is to be able sometimes to take some risks. If those risks happen, as human beings we need to learn from them, it’s in our make up to take a risk. People with learning disabilities are not allowed to take risks. That’s not fair, it’s not the same as anyone else. Risk taking is a thing that’s prevented. But that is how we learn. So by stopping people from taking risks you stop them from learning.
They’re starting to talk about health and social care all into one, but they’ve been talking about that for years anyway. A lot of people, not necessarily disabled people, are a bit sceptical about social services. People see social services as being interfering with someone’s life, taking their children away, that kind of thing. What happens to confidentiality of information between health and social care?
The culture of health and social care is completely different. I’ve spoken to students who are training to be social workers, when they get into the job all that learning is gone out the window. That is because of hierarchy’s – the people at the top tend to say, forget what you learnt on the training course, this is the real world, you have go out there and do. I suppose it comes down to things like money, rules, all that sort of thing. This mostly favours ‘them’, the social services, rather than the individual it’s supposed to be about. That means things like good lives and independent living gets forgotten. Anything to do with support, they say they haven’t got the resources for because again that costs money.
I think in this green paper, if they’re going to do any of these things they’ve got to put costs and savings.
When they talk about ‘buying’ services what they mean is privatisation. We can see what’s happened already with buying services, the Winterbourne was private. It’s about how we buy those services and how they are managed which is most important. It needs to be controlled by experienced organisations making sure that all the protocols are met. We want disabled people involved and employed in every part – being commissioners, buying services, people with learning disabilities will support others with learning disabilities and be more self-sufficient.
We think that just saying they should think about well-being when buying services is not enough. It’s got to be community based services so it fits with the community and it’s got to be guidelines to fit with what disabled people say is most important in their lives.
When an individual moves from one local authority to another – the same type of services have got to be there, otherwise what is the point of moving?
When I moved last time I couldn’t get any help because I had to be a resident for so long before I could get any help.
It’s got to be turned from a negative duty to send someone away, to a positive duty to support someone at home. They should get away from using the medical model to using a social model. I don’t think psychiatrists understand the social model, they think the individual is the problem not the society when society is the problem.
I’m more interested in getting rid of all these units and having that money diverted into community support services – you could get nurses to come to your house and assess you for how much help you need at home to have a community nurse, that sort of thing.
Personal budgets are a good thing, but we really need to move the money at the top so that it all goes in to setting up good community services. We are worried that by making it an individual who has the budget, that there may not be the services they actually need available to buy. We need group purchasing power behind this to get the services that people need, not the services that people who aren’t disabled think disabled people need.
Instead of investing in buildings, invest in the community outside. You don’t need to have loads of buildings. Invest more in people than buildings.
It is good that people will have easy read information about their rights. But it is not enough. We think that people need very detailed good support to help them understand that information and communicate their choices. You need to know why you’re going into hospital, and the only reason to go should be because you’re sick, you’re not well. Being disabled doesn’t mean needing hospital.
What are the rights people will have? Are they covered by the Human Rights Act? Are they covered by UNCRPD?
Advocacy must be covered through this – many people say they have no power.
Where will you get your advocacy from? There should be a list of your nearest advocacy organisation. How will there be funding for this advocacy when lots of self advocacy groups are losing their funding?
Lots of different people and types of advocates are mentioned. But we think the most important is having advocacy from your peers who share your experiences. We think this hasn’t been highlighted enough. There are different types of advocacy, there’s no one advocacy and people need different things.
Why can’t there be a learning disability nurse working in the community? It is good that people will have a list of reasons why they have to go into hospital and why that hospital might not be close to home. But that is a list of reasons, and the person still has to go to hospital. It doesn’t really change anything apart from giving you some paperwork that tells you what other people say you have to do.
For a very long time there has been attempts to get social services to work more closely with the NHS. But they never seem to meet and the cultures are different. It is good to have a law that says professionals have to ask the disabled person what they think. But we don’t need laws to make professionals ask other patients what they think, because professionals know it is right to do that. Why don’t professionals realise that in 2015 they should not have to be told to remember to ask the disabled person what they think and want.
We think it is a good idea to put into law that people have the right to change their mind, to ask to leave the ATU and to be able to choose a different type of living arrangement close to their home. We also think it is very sad that in 2015 we need a law to tell professionals this. This should be automatically done.
We are concerned that when its already the case that people should have a care plan for leaving hospital, that doesn’t happen. Of course everyone should have a care plan! But it is not happening properly now. We are worried that just telling the professionals they should remember everyone should have a care plan is not good enough. They already know that and it doesn’t happen.
Challenge to the Mental Health Act – we think that it is really important that people have proper, independent support when they are in this situation. We do not think that support is good enough when it comes from the NHS and Local Authority because they think too much about what they want and not what the person wants. We think the only safe way to support someone held under the MHA is for them to have the right to an advocate who is independent and able to challenge the NHS and LA for the person. This independent advocate should have legal powers.
Involving People and Their Advocates
We think that it is positive to suggest people with learning disabilities should be on the boards of service, but we think this is tokenistic. We believe that it is vital for self advocates to be employed (paid) in every area of the NHS or the LA which makes decisions about disabled people’s lives. We think that having to work in an office alongside someone with a learning disability who is paid and respected as a professional is the only way that other professionals will come to learn the importance and value of self advocates.
There doesn’t seem to be anything said about other types of advocacy needed.
Helping people use their rights
We think more people having an Independent Mental Health advocate is positive. But we think that it should be a law that trained self advocates work as part of the IMHA teams and that no-one with a learning disability should be assigned a IMHA who doesn’t already work in a co-working situation with a self advocate.
We agree that people should be able to choose who their own nearest relative is. We think that some people will need the support of a self advocate to make sure that they choose their nearest relative and it isn’t someone making a choice for them that they don’t really want. Not all people with learning disabilities get on well with their parents. Usually someone in your family is best, but things like abuse happen in secret in many families and it would not be good if the person in hospital was assigned their nearest relative who is someone who is abusing them at home.
Not every person with a disability gets on well with their social worker. The disabled people we asked laughed a lot at the idea that social workers support people. Often for disabled people, social workers are the people who tell us why we can’t have support, not the people who help us to get the support we want. One person with a learning disability we know told us about a social worker who visited their house. When the disabled person turned their back, they noticed that the social worker was rummaging through their cupboards. The social worker did not ask permission to do this. This kind of experience is very common for disabled people. Again we think that social work department who make decisions about disabled people’s lives should have to employ self advocates as part of those teams.
We think that the pressures of the financial situations facing local authorities make it impossible for social workers to be the kind of supportive, enabling professionals they are trained to be. We think that unless social workers have the ability to truly support people, and the resources to provide that support that this is a bit pointless.
Social workers change a lot. It is very sad that social work provision is so poor that we need to say in a green paper that people should know the name of their social worker. Good social work is about long term relationships and trust. It is not possible for social workers to do a good job without those relationships. And trust needs to be earned. Why should disabled people trust social workers who change so often that we don’t even know what their name is?
This is not really a problem with the people who are social workers, this is a breakdown of the wider system which makes it impossible for them to do a good job, or for disabled people to trust them.
The social worker has a lot of responsibilities in telling people what’s going on, and co-ordinating all those people. We think that will be very difficult to do for lots of reasons. One of the big reasons we worry this will be difficult is because we have to say in a green paper that people should know the name of their social worker. When the system and people working in it are so stretched that their clients often don’t know their names, we think that the social worker cannot possibly fulfil all these responsibilities when they are working under the kind of pressure that means people don’t know their names!
We should get back to the basics! Social work used to be about developing long term relationships and the trust needed to work through very challenging situations in people’s lives. We think that social workers need the time to be able to do this with people, simple things like having half an hour to have a cup of tea and get to know each other. We think without this kind of proper relationship none of the ideas in this green paper for social workers will work. Disabled people know the stresses and strains that social workers are under. That creates more pressure, and more problems for disabled people, when if social workers were allowed to have time to care lots of those problems could be helped.
Support if something goes wrong
We think it is very difficult for people to complain when their health or social care treatment is not good enough. We think that there should be self advocates working in all the complaints departments and that when people complain they should be able to arrange for a self advocate and someone who is legally trained to visit them and help support them with their complaint. We think this is important, especially having someone who is legally trained, because when they get things wrong, hospitals and social work departments blame the person who has been mistreated. It is very difficult for anyone to have the confidence and support to stand up to this without having a proper self advocate and legal representative who are completely independent of the NHS and local authority. We think there is a lack of understanding of the social and medical models. When someone complains about their healthcare or social care, they are treated as the problem like in a medical model approach. If a social model approach was used, then it would be obvious to everyone that the problems are with the system and not having a proper, enabling plan in place, but blaming the person for their ‘failings’ for being disabled.
My rights and the mental health act
People should only ever be in hospital against their wishes as a temporary measure. The purpose of hospital should be to make people well again, not to make them more unwell. We are worried that when people with learning disabilities and/or autism are held in hospitals against their wishes using the MHA it is not always because they are mentally unwell at the time. Sometimes it’s because they’ve got a label of learning disability and/or autism. Places like hospitals and ATU’s are not the kind of environments that make it easy for people with autism especially to get well again. It is very difficult to get away from the kind of situations that can lead to challenging behaviour when people are held in a hospital environment. Hospitals can have very strong smells, or lighting. It can be hard to get any privacy in hospital. This means that for some people with the label of challenging behaviour, hospital would make them worse.
The emphasis needs to be on making sure people get better, not holding them as prisoners. We think that equality means that it is acceptable to use the MHA to hold people with learning disabilities and/or autism against their wishes in hospital when they have the same kind of mental health issues that would mean anyone with or without a disability would be held in hospital under the MHA. We think that it is disability discrimination to use the MHA to hold people with learning disabilities and/or autism in hospitals against their wishes when they are NOT mentally unwell, and it is just because they have a label of learning disability and/or autism.
A single path for mental health act assessment and treatment
We support the idea of a single path to mental health assessment and treatment. This is where having the right to an advocate will be crucial.
The Mental Health Act and people who plan and buy services for the NHS
We support the idea that people who plan and buy services in hospitals should have to follow the code of practice. However, we are concerned that there is no explanation given of ‘really good reasons’ not to follow the code of practice. Who decides what is a good reason? Is it a good reason because it helps the hospital or is it a good reason which is in the best interests of the patient and self advocates have been involved in that good reason decision?
Using police cells and holding people in hospital instead of prison
We support the idea that police cells are not an appropriate place of safety for people who are in the midst of a mental health crisis. We think having to be in a cell makes peoples mental health worse. We were pleased to see that the Queen’s speech addressed this issue for children and young people, but we think it should apply to everyone who is in need of a place safety.
We are concerned that people end up in police cells because there isn’t anywhere else for them to go. We think that the police end up being the final option – they get called when families have tried all the other ways there are of getting someone the mental health treatment they need. It shouldn’t have to be down to the police, because they are not mental health specialists and the uniform can frighten people and make their behaviour worse. We think this is unfair to both patients and to the police.
We think cells end up being used because the police try to find a better place of safety for people, but they get turned away. For example, a nurse explained to us that often the police will take people to a mental health unit, especially overnight or at the weekends and the unit tells the police to take the person to A&E. A&E is not an appropriate place for people in mental health crisis, especially those who also have a learning disability and/or autism.
We are worried that just saying cells should not be used will actually make this situation worse. What needs to happen is that there are always social workers, mental health and learning disability nurses available whether it is during working hours, or at 2am on a Saturday night. If those things and enough places of safety with good mental health support aren’t available, what are the police supposed to do? Will it end up being people locked in the back of police cars waiting outside units for them to open because they aren’t allowed to use cells? This would not be better for anyone than the current situation, in fact it could make it much worse.
There needs to be one point of contact which is available 24/7 for people to phone when they or their family member are in acute crisis. That helpline needs to be staffed by people with the expertise and the ability to find safe, local and secure placements for people when they need them, not when those places happen to open.
Patients who are held in hospital under the criminal justice system
I don’t want people to be institutionalised, that goes against all I believe in. One of the problems here, is that everything is about prevention, not cure. Its preventing people from committing crimes by asking how they can cure a problem, not how we can provide the right kind of support so that people with learning disabilities and/or autism do not commit a crime.
We think it is most important to get the balance right between not restricting the freedoms too much of ‘restricted patients’ and making sure that the wider public isn’t at risk because someone has not been given the support they need to be able to behave in a non-criminal, socially acceptable way within the community.
We think that balance is that some people will need to stay in a hospital type environment under restrictions because they are a risk to themselves and to other people’s safety. But we also think that there are many adults with learning disability and/or autism who are living in institutions under restrictions when they could safely be living in the community under restrictions, where with the right support they can work towards a life in which they don’t need those restrictions anymore.
We think it will be very important to look carefully at each individual when making the decision about whether they can live in the community under restrictions. Advocates and self advocates will be a vital part of this process. We think it would be dangerous to have just doctors making these decisions, but if the decision is made by a panel who MUST include self advocates, family members, trained advocates, experts by experience and experts in supporting people with complex needs to live independently – we think this would be a good way to make decisions which have the right balance of the best interests of the patient at heart.
My right to control my own support and services with a personal budget
We think that there is currently a great deal of confusion about personal budgets and how they can be used. We don’t think that people will be able to shop around well for different care services, especially for the more specialised support. If there isn’t any real choice available in the market, we are not sure that the downsides of personal budgets; such as the level of paperwork and responsibility involved for the individual or family member, are worth the amount of work that person will have to put into managing their budget and their staff. We are concerned about the lack of consistency in what is available in a personal budget because these decisions are made locally not centrally.
Often people in ATU’s are a long way from their home local authority. Which rules will apply to them? What their home local authority says is ok for personal budgets or what the local authority of where the hospital they are living in says is allowed for personal budgets?
What will happen to people who when living in the community are no longer meeting the criteria for social care?
We do support the idea that for some people, who get the right support to manage their personal budget, that being able to put the social care and health funding in one place will help them move into the community from a hospital environment.
Basically we think personal budgets can be great, but they are not the holy grail!
Putting different sets of money together
We think pooled health and social care budgets would help improve the situation for people ready to move back into the community from ATU’s. It will help to make sure they can stay in the community rather than ending up back in hospital because the budget side of things has gone wrong.
We think that it would be positive to have statutory duties about sharing information. But, we do have concerns about whether that will actually prevent the kind of abuse we have seen in places like Winterborne View. We think this is because when local authorities and the NHS want to hide things, they will go to any lengths to do that, regardless of what the law says. We think that advocates and self advocates will need to be involved in this process to be sure it is being done properly. We think that the commissioners need to have paid self advocates as part of their teams to ensure this is all done properly.
Supporting physical as well as mental health
We think it is vital that people receive good, holistic care. We hope that good, holistic health care would mean it is easier to spot the signs of abuse. All the people who have been terribly abused as in patients have had visible injuries on their bodies. These injuries are often hidden beneath clothing because abusers are careful to keep it secret. We think simple health checks that everyone has, like a doctor listening to your chest, are good for spotting health problems, but they are also good ways for doctors to notice if the person has unexplained injuries without being very invasive and making people remove their clothing when there isn’t another reason for that.
We were horrified and outraged by what happened to Stephanie Bincliffe in the ATU she lived and died in. How can a patient who is kept in a locked room, and only given food by staff develop such morbid obesity that it kills them during their 20’s? Stephanie was in a hospital. The hospital she was in ignored her physical health needs to such an extent that it led to her death. We hope that more clarity on mental health hospitals having to look after people’s physical health needs, and having the staff and training to do that properly, will mean that people’s physical can’t get so out of control that it leads to their death in a hospital.
Kaliya Franklin and Gary Bourlet, Co-Development Leads, People First England