Since I have been involved with the Leicester Adult Mental Health Service (AMHS), I have to say I have met and dealt with some first class people, both in the administration, management and nursing teams, but those good people have sadly, in my experience, been very much in the minority.
The AMHS is primarily in the hands of the Leicester Partnership Trust (LPT), part of the NHS. Much of the follow up work, including specifically the carer support service falls under the banner of the Leicester City Council and the Leicestershire County Council. I have no experience of the City Council in this area, these comments are purely therefore relating to the County Council.
I had been in the role of carer for nearly six years before I understood that I was a carer and had rights, rights for support, advice and financial advice via the carers allowance. I was totally unaware of the many third sector organisations in the county who work tirelessly to help people like myself who desperately need some help and some positive advice and support.
So, the two questions to look at are why does a carer for a mental health patient need the help? And why is the carer so often not aware of what is available.
The first part is relatively easy, mental illness is at best a life changing, and at worst a life destroying illness for the sufferer. The illness is not predictable in its progress and is extremely difficult and distressing to cope with, to see one’s loved one destroyed, being a shadow, unable to do anything that they are accustomed to do. There is always the risk of them coming to harm, in extreme cases by their own hand, often because of self-neglect and commonly because understanding goes and what the rest of society does automatically is impossible for the sufferer, they do things wrong, do dangerous things, do potentially fatal things because they cannot manage the simple things.
Beyond these practical issues, there is, whatever we may think, a stigma attached to mental illness. There should not be, there is no real reason for it, but I believe it is a result of fear, fear of the unknown, fear of the not-understood, and even fear of the fact that at least 1 in 4 of us will suffer at some part in our lives.
Mental illness drives people away, however they can intellectualise the illness, when faced with it, they all too often can’t cope with it, yes, it is frightening, and many of us would keep away from it if we could. When the victim is a loved one, you just can’t… half of you screams to get away from it, but you can’t, you know that.
No carers are a given an instruction manual of how to cope, cope with constant repetitive, irrational and infuriating behaviour, to cope with psychotic fits, cope with irrational panic or equally irrational hysteria, cope with someone who simply doesn’t have to motivation to get out of bed, won’t eat, drink, or look after their personal hygiene or even how to cope with your own fears and demons in the darkest hours before dawn. It is not easy, and we all of us need proper professional support in all of these areas, and also how we can keep our own spirits and health, both mental and physical, so that we can carry on.
When your loved one is mentally ill, you are simply not in a position to handle it around the clock, you rely wholly on the professionals providing the expertise, the support and advice. Without that you will inevitably struggle, and quite likely damage your own health, both mental and physical.
It is important at all times, for the good of the sufferer, the everyone, that every discipline, works together as a team, understanding each others concerns around the patient, and dealing with them. This calls for both trust and respect, and a combined effort from the consultants, ward staff and community support teams with the carer and immediate family.
No two people have the same experience through the AMHS, no two mental illnesses present in exactly the same way. Sadly, in our personal experience, this team work was never present, there was no confidence in the medical team knowing what they were doing, the specifics on this I have gone into in many places, indeed the complaint to the Trust stretches to 40 pages of A4, most of the issues picking up individual or group performance, nothing to do with the oft quoted lack of adequate finance.
The way the complaints have been handled, or have not been handled, has also been appalling.
What does it do to the carer to have their loved one suffering mental illness and having no confidence in any single aspect of the service, from the CEO down, because you can see clearly the mistakes, the negligence, the lack of care and lack of commitment? It saps confidence, leaves you isolated and in despair, you are unable relax, you fear for the safety of your loved one. This becomes all consuming, and puts you at high risk of serious illness yourself.
The fact that the LPT doesn’t then want to deal with the complaints shows them in a dreadful light, the clear impression is that they are simply not concerned about delivering an acceptable service, just achieving turnaround target and meaningless statistics.
The LPT is at least now starting to face up to the fact that it is imperfect, and is doing much to involve everyone in bringing about improvement for which they should be applauded.
The County Council along with the LPT are responsible for providing information and support to the carers. Do they? Sadly not.
When someone becomes mentally ill, their partner almost by definition becomes their carer, but in most cases they don’t realise that. They don’t realise that there is support out there for them and that they have rights. Beyond that, even when they do realise they are carers, the stigma attached to mental illness, pride, lack of energy or a thousand other things prevent them admitting it. Often by the time they accept they need help they are too late, the damage is done.
Carers need support and education from day 1.
There are many failings in the service provided by the County Council, including the inadequate impact of caring form, failure to provide funding for carer respite, failure to consider the implications of mental health care and failure to acknowledge the importance of carers and the amount of stress they are under.
So, it was with optimism I left on Tuesday morning for a consultation meeting looking at the carers strategy.
First thought was, if the strategy is 2012 to 2015 why has it not yet been started, let alone finalised when it should become live in a couple of weeks.
So, on to the meeting, the first presentation given was by Councillor David Sprason. He spoke of the qualities of the County Council and their plans for the strategy. Was it exciting? Encouraging? Optimistic? I have seen many power point presentations over my years and cannot remember one worse than this. He wouldn’t look at the audience, read every word, clearly did not understand what he was saying, looked and sounded bored and disinterested throughout, had not done any preparation. His presentation lowered the mood and as a result took away much enthusiasm and hope.
He was followed by another guy, who spoke in more detail about the plans, he had at least prepared and didn’t have to read every single line, but sounded every bit as disinterested, so again we were left uninspired.
Questions started to flow in…. the first, and possibly best, was “why was “mental health” not mentioned at any point during the presentation. There was no answer offered, just a comment to “park that thought”.
A representative of the Council responded however that she didn’t see why we considered caring for a mental health patient was any different to caring for a person with physical problems. That is the whole key really. There are many reasons, the first being the unpredictability of the illness, the other being the high risk of the patient harming themselves either intentionally or by doing something silly. Not a high risk with physical caring.
So, we got down to the detailed conversations with a County Council facilitator at each table. There was of course a great deal of emotion and indeed anger displayed, highlighting not only what is wrong with the council but offering some very practical options for them to provide a better service.
So what was the overall feeling at the end of the meeting. We had two presentations, the first from the Councillor responsible for the whole subject, he knew nothing of the subject and appeared totally disinterested, leaving immediately he had finished his presentation
The second presentation was uninspired. Most questions raised were parked and not explored.
The complaint has so often been that the Council does not listen, the proof of the pudding will be in what comes out of the process, but I felt we had been through it before, and that the council will simply have heard what they choose to hear to support their plans.
It may be unfair, they may deliver a superb carer strategy out of this, but going from past history, and judging by the level of commitment and interest displayed by the senior people, it seems not unreasonable to fear the worst again.
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