Transforming Care? Should Advocates be doing more?

“The advocate turned up, said nothing and we’ve not seen her since”

A mother told me this a few months ago. I met her during an event arranged by Rightful Lives which brought together family members, people who had used (and use) mental health services, legal experts and organisations to look at the rights of people with autism, learning disability or both who are being locked up under the Mental Health Act. People who, had the Transforming Care programme been the success promised, would be out of hospitals and living in their own homes.

The mothers story alas, was one I am all too familiar with. Her adult son has autism, and due to a breakdown in a community placement was detained under section 2 of the Mental Health Act. This became section 3. This was 6 years ago. He is not treated for anything (you cannot ‘treat’ autism) just kept in the Mental Health Hospital until a community placement becomes available. He is 28 years old.

Since this event there has been some incredible reporting from Ian Birrell and Jayne McCubbin covering the scandal of people with autism or a learning disability being detained for long periods (latest data suggests an average stay of 5 ½ years[1] despite the Code of Practice recognising ‘people with autism should be detained for as short a period as possible’). Then came more shocking revelations of the profiteering of private mental health hospitals who regularly charge the State £13K per week to care for a person, with profit margins as high as 30%[2].

In January the Joint Committee on Human Rights looked into the detention of people with autism and learning disabilities and took testimony from parents whose loved ones have been detained including the father of 17 yr old Bethany who had been held in seclusion for nearly 2 years. Members of the Committee were visibly moved when hearing distressing stories of the use of restraint leading to broken bones, the use of seclusion because untrained staff have no idea how to offer support and the environment itself being a deeply frightening one which exacerbates a person’s distress. Hearing these testimonies left me with the disturbing feeling that this was just the tip of the 'quality of hospital care' iceberg.

Throughout all of this I couldn’t help but wonder ‘where is advocacy?’

I asked another mother whose son was being held at one these hospitals whether he had an IMHA. She told me he had had one, who turned up at a CPA, said nothing and they hadn’t heard anything since. Jumping to the unknown advocates defence, and mindful that us advocates value independence and confidentiality above all else, I explained this was probably down to the IMHA simply upholding advocacy principles and we should assume the advocate was supporting him, just not within the sight of mum. I explained the advocate would be working at her son’s instruction and unless he specifically instructed the advocate to talk to parents, it would not be something they would do. The advocate would concentrate on him and him alone, not parents, not family. She understood this, but then said ‘but my son is non-verbal. He doesn’t know these meetings are happening. I know my son. I know what he needs. The advocate doesn’t know him, how can he possibly advocate for him?’ I subsequently found out that he no longer had an IMHA – mainly because of a change in provider and the new service hadn’t picked him up.

I must admit, my default position of defending advocates was sitting on very thin ice. I couldn’t help but question what was advocacy doing? Mindful too of the Right to be Heard[3] research which identified that people who lack capacity to ask or instruct an advocate are missing out on IMHA support. This is in part because clinical professionals aren’t referring so IMHA services simply don’t know people exist, but it’s also down to less then brilliant advocacy: when they do receive a referral, they don’t know how to ‘do’ non instructed advocacy. This wasn’t good enough. This young man, who has been detained for 6 yrs, and was ready to live in the community had no-one independent to speak on his behalf, represent his interests and protect his rights. He didn’t have anyone trained and confident in navigating the complex system of mental health and social care to speak up for him. This isn’t good enough.

The more mums and dads I met… all across different parts of the country had similar disappointing tales of advocacy. These families were being left to fight for the rights of their children - alone. My next question then became ‘Why don’t advocates work more closely with families?’

The obvious answer is that we are led by the person, not their families. Advocates, quite rightly, are fiercely protective of this. If we start to work too closely with parents we either start to advocate for the family instead of the person, take on a mediation role or simply give the appearance that we not aligned to our partners viewpoint.

However, in non instructed advocacy this just doesn’t stand up: we MUST work with people who know our partner if we are to successfully build up a picture of what is important to them. And this of course includes families.

The mothers I meet are natural advocates. They share experiences of being labelled as troublesome, of relationships with professionals as very difficult. I have heard many routinely told they can't attend meetings. The truth is, an effective IMHA could and would have been an ally in securing the bigger goals of getting their children out.

So why aren’t we getting people out?

The way the IMHA role is explained in legislation is strictly through a lens of rights introduced by the Mental Health Act. We read that the IMHA role is to help a person understand the legal basis for their detention, their rights afforded as a result of that detention, attending meetings about care and treatment etc. I’ve never heard a person ask an IMHA for help in ‘understanding the relevant parts of the Act that apply to me’. But I have heard hundreds of people ask IMHAs for help in getting out.

I have confidence that IMHAs routinely respond to this by explaining rights of appeal afforded through the Tribunal system and/or Managers Hearing and routinely observe IMHAs helping people to access and participate in this important safeguard. I don’t however routinely see IMHAs explain to people that their Nearest Relative has a right to request discharge (possibly because we are not used to thinking about family members). I’m sure it happens but I don’t think I’ve ever seen an IMHA work to get financial support for parents travelling hundreds of miles to visit. I don’t see many IMHAs routinely get involved in discharge planning.

Discharge planning is the bread and butter of supporting people who come under the Transforming Care banner, many of whom lack the capacity to make decisions about care planning or housing. This means people need IMHAs who are confident in using Non Instructed Advocacy to support and represent them to get good homes and lives in the community.

I wonder if a problem has developed where IMHAs see decisions about longer term care planning, including where and what type of accommodation the person will live in, as outside of the IMHA role – as these decisions are not primarily connected with a person’s mental health. At best, the IMHA may refer to a Care Act Advocate who can pick this up.

I am fully prepared to have this shot down, but I don’t think this is right.

There are literally hundreds[4] of people across the country, detained under the Mental Health Act, who are ready to be discharged but a lack of community placements, appalling commissioning and lackadaisical planning means people are left to languish in mental health hospitals which are totally unsuitable for them to live in. Remember the average stay of a person affected by Transforming Care is over 5 years. Yes, over 5 years.

IMHAs could have a huge impact on this and I wonder how different this would look if IMHAs focused more on the following activities:

• Working more closely with families. Especially when the person lacks the capacity to instruct the IMHA and the longer term plan is for them to live close to home. Where families are going to be involved in the person’s life, it’s a no brainer to talk to mum and dad and sister etc. A good IMHA should be asking, ‘if my partner had capacity would they want me to talk to their family’, ‘would they want me to make sure I live close to mum and dad’.

• Working with NHS England to ensure CTR’s are being held – and their recommendations are being followed. I weep a metaphorical tear every time I see a CTR report that recommends the person has an IMHA – why on earth do they not have one already?

• Asking for discharge planning as soon as you become involved. What is the plan? Who is involved?

• Looking into housing options. This is without doubt one of the stumbling blocks to getting people out and the earlier it is looked at, the earlier you can start to work on the blockers.

• Pushing commissioners to find and identify suitable providers who can offer the specialist care and support in the community that people need.

• Attending discharge planning meetings.

As the MHA Code of Practice tells us ‘hospitals are not homes, and most support for people with a learning disability or autism should be provided in a local community setting’. Did you know that there is nothing in the Mental Health Act that stops IMHAs from helping people get these homes. I guess stretched or not enough resources as well as a culture of ‘we don’t do that’ prevents IMHAs from taking on these roles.

But this is what people need – and if we don’t do this, it means people will continue to suffer at being inappropriately detained, their human rights ignored and their chance at living happy and fulfilled lives in their own community diminishing.

I’m going to end this with good and bad news. The good news is that the mum I mentioned at the start of this blog, told me just before Christmas that her son had come out and would be in his own home in time for Christmas. The bad news (for advocacy) is he came out because of the advocacy his mum undertook – not because of anything an IMHA did.

[1] NHS Digital. Assuring Transformation: Learning Disability Services Monthly Statistics (October 2018). Published 15 November 2018

[2] https://www.dailymail.co.uk/news/article-6324559/Families-tell-children-autism-learning-disabilities-locked-away-years-end.html

[3] https://www.uclan.ac.uk/research/explore/projects/the_right_to_be_heard.php

[4] Approximately 2300 people with autism or learning disabilities are currently detained in hospital and affected by Transforming Care.