Whose Recovery is it Anyway?

Nottingham Febuary 21st 2011

 The event was funded through the Open Up project, now part of MIND. I have as far as possible provided an outline of peoples talks on the day and tried to include contacts for people to read more and to find out more about the work of some of the people and organisations represented. I have tried to summarise from all the pages of flipchart some of the main ideas and thoughts that were raised on the day and followed this with some conclusions of my own.

Unfortunately time pressures on the day meant that most of the the soapbox slots got cut but thanks to Raza, Brigid and Adam for their participation.

If anyone wishes to add or change anything please let me know.

At the bottom of the page I have included some comments I have received from people since the event and their is space to add further comments. We hope this space may help with organising further events for peers around the country and more opportunities to explore these issues.

Programme for the day >>

  Introduction

“The term ‘recovery’ in the UK has been rendered almost meaningless. As most health and social care services in England are now following a recovery agenda, Recovery is becoming equated with loss of services, loss of benefits, and a push towards returning to work, without the support, retraining and flexibility this would require. A recent report (Perkins et al 2009) recognises that not everyone can regain the confidence to work, and states they should not be penalised for the failings of a mental health system they have no control over.”

Speakers

Torsten Shaw - This recent statement from Jan Wallcraft  raises many of the concerns that I have myself and have increasingly heard from other people. The radical ideas that under pinned ‘Recovery’ fundamentally challenged the bio-medical understanding of mental distress, but ‘Recovery’ appears to have been made safe and unchallenging.

Recently we have seen the beginning of large scale adoption of ‘peer support’. Peer support, self help, looking out for each other is clearly not new but in the 70’s it became part of the challenge to psychiatry as many people who rejected psychiatric services and the treatment they had received tried to find ways to provide their own support. In the USA these ideas have been picked up and have begun to be ‘mainstreamed’. Recently we have seen this model of ‘Intentional Peer Support’ brought to the UK where it is gaining rapid adoption.This is a move that many of us welcome as it represents a recognition of the value of lived experience and the centrality of relationships to our ‘recovery’.

These changes however need to be placed in context. We are seeing huge cuts in health and social care while the numbers of people with a mental health diagnoses continue to soar. Taking on large numbers of PSW’s (Peer Support Workers) offers a way to save money because they are on far lower wages than qualified staff, whom they are replacing. As I am not convinced about the merits of most of these qualifications (as opposed to the merits of individual staff) that does not concern me too much. What does concern me is that PSW’s are being expected to take on the duties that these staff had and this includes: monitoring compliance, delivering drugs, control and restraint and forced medication.

PSW’s are being asked to help deliver a ‘recovery’ based service but this is a version of recovery which is happy to co-exist with existing practices and which may become an instrument used to blame people for their failure to ‘recover’ leading to a withdrawal of support and services (other than the use of drug treatments). They may be expected to carry out coercive actions while at the same time being used to encourage people to comply because of their close relationships.

These activities go against the values and ideas from which they are drawn and potentially put us in a place where we help to maintain our own oppression.

It was with these issues and concerns in mind that I decided to see if I could bring together others who may share these concerns and see if we could begin a discussion.

  • Can we produce a statement outlining what would be required to be considered peer support or recovery?
  • Do we abandon this language and move on to something else?
  • How do we protect the radical core of these ideas from being destroyed?

Clearly these are just my thoughts and I do not want to be prescriptive, however if we constitute a movement I think we need a more collective response.

 

Primela Trivedi - outlined how recovery has been approprited by mental health services to fit in with their already existing structures. Primela points out many of the contradictions about the use of recovery by services. Talking about personal journeys of recovery and then using structured models with clearly defined stages and standardised outcome measures. Acknowledging the impact of discrimination against people with a diagnosis but failing to acknowledge the often more profound effects of racism. Talking about hope and social inclusion but failing to ackowledge social inequalities resulting in large numbers of people being denied access to opportunities, resources and power. Hope is much eaiser if you have access to decent living and resources.

Primela goes on to emphasise that for black service users ‘recovery’ does not begin to describe the process that needs to take place, a journey more usefully described as liberation. ‘Recovery tends to focus on individuals and this makes it easier to ignore cultural, political and economic realities.' Read Primela's article

 

Alison Faulkner – spoke about a recent piece of research she carried out about peer support. Alison reminded us that peer support was nothing new but having people paid to carry out this role was.

Many people were excited about the possibilities for challenging discrimination, sharing experiences and helping others.

Concerns were raised about potential conflicts around the roles and boundaries of peer workers. The peer element is arguably removed when you have people in a paid and formal role working to service guidelines. It introduces a degree of separation and power differentiation that would not otherwise have been there.

Alison also raised the issues of how these human skills may become professionalised and taken away from the control of the people it is supposed to support.
Read Alison's slides from the day       Read the report on peer support

 

Kati Turner – argues that the meaning of ‘recovery’ has moved a long way from its roots in the survivor movement. It is part of mainstream service provision complete with recovery workers, recovery teams, recovery model and now recovery colleges. But there is not one ‘recovery model’ there are many ways of recovering and this is a personal journey and there is a danger of being seen to follow ‘the prescribed path’.

The work of organisations such as Emergence has begun to dismantle the ‘one size fits all’ notion of recovery around personality disorder and  promote the importance of a narrative approach to understanding.

Some people see their diagnosis of personality disorder as a journey of self discovery but this does not always mesh with the statutory view of recovery. This is why creative arts are so important as they foster an understanding drawn from within rather than externally imposed.

When delivering training alongside professionals there are still perceptions about the ability and the knowledge of the service user trainers. Real expertise can only emerge from a truly collaborative partnership.

Currently Emergence is engaged in research looking at the impact of ‘Recovery’ on people with a diagnosis of ‘personal disorder’ and it has produced a huge variety of responses.

Social inclusion and recovery as promoted by services emphasise social contact, education and employment. For some people though this is so traumatic recovery focuses instead on their internal environment and the outside world is conciously rejected. For some ‘recovery’ means staying away from a world they perceive as unsafe and judgemental and withdrawing into the safety of their internal world.

"My own ‘recovery’ owes much to my stay in a therapeutic community where I first came into contact with peer support. Sadly most of these communitites have closed down. Therapeutic communities enabled people to find their own path with the help and support of others."

While there is much talk about the value of peer support work the highest importance is given to its cost effectiveness. How well will peer support workers continue to be supported after their initial introduction? There is often a high emotional cost to be borne working within and trying to improve services and this may not be recognised within services.

“There is a real danger that attempting to adopt a universal policy of ‘recovery’ which can somehow be applied to all will be more harmful than therapeutic – not only to service users but to mental heaalth professionals and the wider community."

Kati Turner, Kath Lovell & Andy Brooker (2011): ‘… and they all
lived happily ever after’: ‘recovery’ or discovery of the self in personality disorder?,
Psychodynamic Practice, 17:3, 341-346

 

 

Elizabeth Maitland – Spoke about the organisation Recovery based in Leicestershire.

More information

 

 

 

Mary Nettle – Spoke about the petition for Truth and Reconciliation in Psychiatry.
 ‘Real reconciliation and partnership may only be possible once a line has been drawn, through the symbolism of an apology, which explicitly recognises the need for a new trajectory in the future’.
 Slade,M. (2009) Personal Recovery and Mental Illness, Cambridge, Cambridge University Press.
 
We call for an official Apology for damaging treatments since the origins of psychiatry circa 1850s

Now that our human rights are (belatedly) internationally recognised, in the UN Convention of the Rights of Persons with Disabilities (CRPD), we think the time is right to call for an apology from our governments and professional psychiatric bodies for a list of wrongs (of which these are just a few possible examples):

Oppressive, incorrect and unproven medical theories underpinning damaging treatments dating from the 1850s * onwards which have been harmful physically and psychologically (not to deny that many individuals working in psychiatry and mental health services do their best to help patients and service users. This is not about individuals but a chance for psychiatry as a whole to admit and redress the failings of its profession).

Creation of a body of dubious ‘knowledge’ based on research service users/patients had no involvement in or choice about, and which has been given legitimacy to overrule people’s own self-knowledge and expertise by experience.

Creating stigmatised services which isolate people from their families and friends and wider society and make it hard to recover self-belief, health and social status. More information and to sign the petition

 

Karen Machin – introduced us to a discussion about how we measure outcomes. Can we measure recovery using traditional outcome tools which tend to focus on symptom reduction. Karen looked at some of the tools that have been developed such as DREEM, HoNOS, recovery star. It was felt that none of these approaches was quite adequate and that we maybe need to develop something else focussing on a capabilities approach. Karen's slides

 

 

Notes from 'World Cafe' and Workshops

flip chart example

Peer support work

  • What is the role of peer support, how does it differ from friendship and befriending?
  • Should we be defining what a peer support worker is?
  • Maybe we could implement some kind of standard which trusts could then be encouraged to pay for accreditation.
  • Is there a danger that intentional peer support as developed by the NHS will take on coercive roles?
  • How sensitive are we being about cultural differenes in understanding of friendship and the possible role of peers?
  • Do we think PSW’s should have a practical function such as helping with the house or in the garden if necessary?
  • It is clear that peer support is being introduced at a time of substantial cuts. If peer support is simply viewed as cost cutting is it domed simply to adopt the practices and behaviours that already exist in services rather than seriously being able to challenge them?
  • How do PSW’s manage disclosure and boundaries they have with people they may well know from their time using the services.
  • How will recruitment and retention be dealt with?
  • What if any kind of career progression is possible for PSW’s?

Recovery

    flip chart example
  • Recovery is personal and cannot be made to fit in to a standard pattern. It needs to be measured in individual ways.
  • Has recovery become something else we can fail at?
  • How useful is it to still talk about recovery? The word means something slightly different from the way that we have used it and it now has taken on all sorts of new and undesireable characteristics as a result of its adoption by the NHS.
  • Has recovery been reduced to getting a job?
  • We have seen many services rebrand themselves as recovery based but little significant change in practice.
  • What would we expect if we really did have recovery based services?

Networking

  • We need to do more to link groups up and to share resources. One way we can start this is to arrange more of this type of event around the country.
  • It cost about £1500 to put this event on which was funded by Open Up. How would we fund future events, can we do them cheaper?
  • Can NSUN act as a coordinator for such events?
  • Lets get a web forum going were we can discuss these issues further (there will be a space opened up for comments on the Making Waves website). What do we do about people with little or no internet access?
  • How do we ensure that people beyond those involved with ‘service user’ groups get to know about it?
  • How will we ensure that BME groups are included especially as they are hugely underrepresented in our groups?

Campaigning

    flip chart example
  • Think how many peer support workers you can have for the salary of one psychiatrist.
  • Truth and Reconciliation in Psychiatry – promote the campaign for an apology for what psychaitry has done.
  • Promote meditation over medication.
  • Highlight how little money is spent on mental health research compared to a disease like cancer and how little of that is spent on social research.
  • We need to develop a high profile challenge to the cuts.
  • Develop a manifesto for change – lets come up with a vision of mental health services and support.
  • To ensure that all frontline staff get some training from people with lived experience.
  • How do we measure the qulity of training provided by ‘service user’ trainers.
  • Devlop our own audit tools and promote the importance of having people who use the services being involved in ensuring standards are met
  • Develop our own assesment tools also as outcomes still tend to focus on things like how often and how long you’ve been in hospital. Lets have patient reported outcome measures.
  • We can learn lessons from therapeutic communities and the way they are/were run.
  • Could we form think tanks both locally and nationally to lead on recovery?

Other means of effecting change

  •   To ensure that all frontline staff get some training from people with lived experience.
  •    How do we measure the qulity of training provided by ‘service user’ trainers.
  •    Devlop our own audit tools and promote the importance of having people who use the services being involved in ensuring standards are met
  •    Develop our own assesment tools also as outcomes still tend to focus on things like how often and how long you’ve been in hospital. Lets have patient reported outcome measures.
  •    We can learn lessons from therapeutic communities and the way they are/were run.
  •    Could we form think tanks both locally and nationally to lead on recovery?

 What next?

  • Further events like this - we did have some discussions with NSUN about taking on some role in organising another event. This need following up.
  • Can we develop our own tools for audit and assessment? We have the beginning s of some of these tools so how do we proceed from here?
  • Could we create a set of standards for recovery and peers support for which we could develop a 'kite mark' of some sort?
  • How do we promote the survivor/service user movement and ensure that more people who have used services know about it?
  • How are we going to organise campaigning particularly against the impact of cuts in services and benefits?  Mad pride do have a campaign.

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Comments

 
  • Since it is the job of peer support workers to help patients then perhaps it would be appriopriate to practice "restraint" techniques on psychiatric nurses and doctors who are violating patients human rights by forcing them to medicate or undergo ECT against their wishes.

    Posted by Kathy , 05/06/2012 12:18pm (5 years ago)

  • There seems to be a disconnect, currently, in the Notts pyramid of peer support in that there is no linkage between the mental health related self help groups and Julie Repper's initiatives

    Posted by Mat Rawsthorne, 01/08/2011 10:51pm (6 years ago)

  • Looking at this, I am in no doubt that people in denial that large areas of ill health fall under an 'incurability' banner, will be clinging to their 'recovery' flag-ship along with all the sacred cows that that entails.

    Recovery has become an esoteric religion with the main proponents trotting out litanies that betray a sad fact that they have never been ill in any serious sense, but are merely serving up an unpalatable gruel to force-feed the vulnerable and the gullible that number among those of us with continuing ill-health. I would never even entertain a notion of recovery if what is being treated in me is incurable and deals only in containing florid symptoms to make them vaguely manageable!

    Posted by Rodney Yates, 01/08/2011 9:44pm (6 years ago)

  • Thanks for inviting me yesterday, some common themes seemed to come up. Mainly, that we are confused about 'recovery' in general & that there is a semantic ambivalence of the word and therefore the 'doing' of it. Language is not neutral, it is ideological, so, understandably, the medical model practitioners' will have their version (or hijaking of grass roots' version), it just depends which side you view it from.

    However, just to re-cap on what we talked about just before I left, with regard to 'peer' support, (again, same confusion about meaning & practise). It seems that giving and receiving support is very multi-dimensional. In my experience as a support worker & working as part of a team, we all had different ways of working with people & there were heated debates between us about what that should & shouldn't involve.

    Professional boundaries (as a support worker, not 'peer' support)

    This was discussed when one team member revealed something about themself to the person they were supporting. This was beneficial to the working relationship on this occasion. However, when this was discussed with other colleagues, there had been occasions when the people being supported were less than happy with the notion of support workers having current or past mental distress. One new client, when being assessed for the service, indicated that they would not want a 'nutter' working with them! They believed that mental health charities tend to take on those with 'lived experience' but this person had decided that they would not find this helpful in a support worker.

    Another example was when a support worker was reassuring a 'client' during a panic attack in the city centre. The 'client' asked how would they know how it felt? The support worked revealed experience of panic attacks & how they had learned to controll them. The client did not appreciate this and became angry & resentful about this, feeling less worthy. They felt resentful that the support worker had become 'successful' in finding employment & moving on in life. Not a successful move on this occasion, to reveal 'lived experience'. The client requested another support worker.

    Identity

    I worked with many clients around the idea of identity. Many clients often had more than one diagnosis of 'mental illness'. Many had been 'revolving patients'. It became extremely difficult to seperate and embrace an identity that wasn't bound up in the diagnoses/labels. A self-fulfilling prophecy resulted & these people existed in response to these labels and felt safe within them. They believed they were 'ill'.

    Strangely enough, I felt excluded recently, when searching for volunteer work & could not offer my time to a group because I was not a current user or in 'recovery' from a drug or alcohol lifestyle/addiction.... I can really see that it can be useful to have some experience of .......whatever. to support someone in their experience but it isn't that simple. I feel that any person can be supportive, with or without 'lived experience', it's the therapeutic alliance that's key. That takes time. To build a trusting, non-judgemental, supportive relationship doesn't happen spontaneaously. I wonder if the choice has been taken away by those being supported & those wanting to provide support, when we add to the equation 'peer'...support worker. Difficult!

    I now feel confused as a result of yesterday for this reason. In conversation, I provided a bit of my own 'life story'. I was never diagnosed with an 'illness' & was told that I did not require a 'label'. According to more than one psychiatrist, my bizarre behaviour was the result of prolongued trauma associated with a long-term physical illness. It would not be life-long. They were right. However, I was a voluntary in-patient on 2 occasions, 17 & 13 years ago. I have 'lived' experience but that was a long time ago & doesn't feel like a huge part of me now - it did then! The person I was talking to said, as a joke, "So you're fake then Lee, coming here". I found this interesting. I have had a past experience of trauma & short-term bizarre behaviour but my identity is not bound up with that. I do feel it is part of my rich life journey but, again, that feeling of exclusion again. Maybe it just says someting about how I feel at the moment!!

    Anyway, I hope this is useful as I dashed off before the workshops & didn't write my comments on the board.

    P.S. Why can we not just say 'experience' instead of 'lived experience', it's hardly gonna be dead experience is it? Language eh, it's ever evolving!!! lol

    Posted by Lee, 06/07/2011 2:38pm (6 years ago)

  • I was interested in the event you ran questioning both the concepts of Recovery and of Peer Support.

    Reading the day centre has reorganised to be run by peer supporters who are supported by staff.

    There is a display about recovery put up by one of the peer supporters.

    It seems to say that Recovery is anything you want to be as long as you feel a little bit better. This does not seem to be very ambitious.

    Meanwhile practices in the local trust seem to be much the same as they have been for the last few years, or possibly decades. If you are severely distressed you get medication and a chat with a social worker once a fortnight. They will often encourage people to do their washing up when they may be feeling their is little point in living. I hear one or two workers in the CMHT are wonderful and most of the rest are mainly harmless. One or two are downright useless and occasionally nasty.

    The centre is supposed to be run by peer supporters but I hear they do not turn up sometimes.

    I recommended a hearing voices course and the up and coming conference of Child Sexual Assault and mental health as a way of upping the skills of Peer Supporters so they could be of more use to members. I was told by the centre managers that this was not in their service agreement, that they would refer survivors to other services (there aren't many) and that they did not want peer supporters trying to be bad counsellors but they would support people back into work.

    I said that if they did not emotionally engage with members and at least be approachable about these issues then they will not be able to support people back to work because if the underlying issues are not dealt with (even if they are not named then at least the level of distress probably needs to be recognised) then any work placements they find are likely to fall apart.

    I wonder if the Peer Supporters do not turn up because it is early days for this system or because they do not support them adequately?

    Sometimes I think I am a seething mad man.

    But having supported a fair number of people over a number of decades, severely distressed members of the day centre included, I suspect I am not.

    As part of the Rose and Thorn Theatre Company we sometimes interview people about their mental distress, it's causes and how the mental health system responded. People often open up and calm down. Sometimes we get the impression this may be the first time they have talked about the causes of their distress. Often we think that if we were offering ongoing support (and we are clear we are not, we are using theatre to help service users get more of what they want) most of the people we talk to could completely recover. That would mean no symptoms, good relationships and if they want it and if it is available, paid employment. Some of these people have used services such as the day centre for years yet we still thought they could recover with sufficient understanding and support.

    Instead they are offered dominoes, pool tournaments and knitting circles.

    I wonder if Peer Support in this case means cheap labour?

    Again I wonder if I am a seething madman.

    Any comments welcome in light of your event.

    I hope it went well.

    Posted by John, 01/07/2011 10:38am (6 years ago)

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