The Stone in My Shoe.

I have sometimes spoken in this blog about The Pathways Group, a group which I attend once a week and which is run for people with experience of psychosis. I have often commended it for its therapeutic value, its facilitation of social connections, and perhaps above all, its achievements. Indeed, it's perhaps a rarity for a group for people with conditions like ours to have such cohesion, and the fact that it has now been running for 8 years is testament to this in-group solidarity.
As I've been a member of the group since its inception in 2007, I have a particular fondness for it and the individuals which make it up, and so have felt somewhat aggrieved by some of the things which have befallen our little gathering since the introduction of what are sometimes euphemistically called, "the changes" to our local mental health services. I tend to think that when people mention "the changes", what they really mean is, "the cuts". For if you can describe the loss of nursing jobs, beds and a resource unit as "changes", rather than "cuts", I guess it's just supposed to make things more palatable to those who are affected by them. But does it, in fact, make any difference at all what you call such things? They still impact on the lives of those already unfortunate enough to find themselves unwell.
I may be wrong, and no doubt mental health staff would tell a different story, but the manner in which The Pathways Group has been affected by "the changes" seems, to me at least, to be particularly unfair.
Before the introduction of such "alterations" to our service, The Pathways Group enjoyed access to NHS resources. The group was run from the safe and secure environs of a local resource unit. Staff who facilitated the group regularly numbered around four. There was a structured and often educational element to the group, whereby the first half hour was given over to socialising and the remaining hour and a half to learning about our illnesses and developing coping strategies and such. We often had people visit the group, such as psychiatrists and counsellors, who gave talks and shared their insights. On one occasion we were even visited by the Chairman of the Trust, who told us of the importance of groups like ours. We were also involved in various projects, the most ambitious of which resulted in us making a short film about our experiences which was screened in front of around 200 people at our local museum. We often went out on day trips. Staff seemed to be continually telling us of how our group was an exemplar of good practice, and indeed were skilled in boosting both individual and collective morale. In short, the group was a vibrant, dynamic, educational aid to people's recovery.
Fast forward, if you will, to the beginning of 2012. Already the group has been told that the room used for its meetings at the resource centre has had to be used for another purpose. Exactly what that purpose is is not disclosed to group members. So, meetings now have to be held at our local library. Aside from a few irregularly attending new members, the group's stalwarts appear to be all that is left, and numbers begin to dwindle. Members speculate that this may be due to the new venue being regarded as perhaps not as safe and secure as the resource centre. Despite this, the lead facilitator has a folder full of planned sessions for the group, so it's clear at this point that there doesn't seem to be plans to leave it unattended by mental health staff. However, when the cuts, sorry, "changes", begin to take place, group members are informed, not face-to-face, but in a rather curt letter, that staff will no longer be facilitating our group due to a poor uptake of referrals, and should we be unable to attend any meetings for which we do not give 24 hours prior notice, we will now be responsible for the £15 charged by the library in such instances.
So, the staff who ran the group are now gone, and not only that, but all the resources and expertise that they brought with them. No more structured, educational element to aid people's recovery. No more interesting projects. No more trips out. And visits from other mental health professionals dwindle to virtually nought.
The group is now entirely service user led, which brings with it its own problems. While some staff may have said that it was always their aim for the group to become self-run, it was perhaps the way they went about this that was so upsetting.
Furthermore, because of the nature of the illnesses people in the group have, it isn't unusual for them to bring problems and issues with them which are difficult for other group members to cope with or to know exactly what to do about. The group is made up of people with diagnoses of schizophrenia, schizo-affective disorder, bipolar disorder and depressive psychosis, and one would venture that to leave such people with no professional help at all (some, like myself, having been discharged from secondary mental health services) is bordering on the incompetent, particularly when we have had members who have turned up expressing thoughts of suicide or self-harm.
So, what to do? Well, letters explaining our position were written to, among others, the head of the psychosis pathway. The group apparently didn't even merit a response in that instance. There was also a face-to-face meeting with the Chairman of the Trust, at which he said that some action would be taken. The upshot of this was that the group is now supported by one STR worker from the Social Care Team. While she is a welcome and extremely pleasant addition to our gathering, I do not believe she is a trained mental health nurse, which is maybe what, on occasion, the group has required.
It's now been over three years since mental health staff were withdrawn from our group, but it's still running, and of this I am extremely proud. It's just that when I remember how badly the group was treated, and how, when we raised our voices, virtually no action was taken, it makes me feel somewhat powerless. Such things do nothing for the self-esteem of those already plagued with mental ill health, and so perhaps our only revenge is to show everyone that we can and are doing things for and by ourselves. Perhaps the way we've been treated is just a mere niggling irritation, like a stone in one's shoe. The thing with a stone in your shoe, though, is that if it isn't removed, the pain gets worse, and with not even an acknowledgement that those of us in the group have been let down, that pain serves as a reminder of just how powerless and vulnerable those with illnesses like mine can be made to feel.              



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