A Blessing or a Curse?

I recently read a really fascinating and thought provoking blog, posing the question is mental illness always a curse. My first reaction was to say that of course it is always a curse, what good can come out of mental illness?

It was with some scepticism that I read on, but by the end the writer had made some really great points, and left me thinking about the subject, and I now realise that it is true… mental illness is not always a curse.

It can be of course, for my wife, mental illness has metamorphosed into dementia, which has effectively ended her life, and there is nothing about her condition to dispel the thought that mental illness is a curse. However, for many many people, the mental illness does not take such a drastic course, there are lucid spells between attacks and indeed recovery.

For the majority then, where there are lucid moments, or recovery, there are often life changing revelations, of course it doesn’t feel like that, but there really are.

For an individual who has been driven into depression by the pressures of modern life, the illness robs you of all self esteem and motivation, but when the condition lifts you see clearly that there are limits to what you can do, and you get new priorities which accommodate the risks of your condition, When this happens your lifestyle may change, but I promise you it will be better, because you will value things so much more because you wont be racing from one thing to the next, you will understand what is important in life.

I’ve had depression, I’m one of the lucky ones because having watched my wife for so long, I recognised the symptoms in me, I don’t feel the stigma (again, I’m a lucky one) and was able to go to the right people to ask for, and get, help before it took control. I did however go far enough down the road to have a clear understanding of what she was going through, what so many others are going through, and that allows me to understand, and hopefully to support.

I have also learned much about myself through this period, in my youthful hippy days, we all spent an eternity trying to learn about ourselves, but all we really learned was how to roll a good joint and make the most of it… didn’t really learn much except how pretty the colours were all around.

Going through mental illness, and trying to help my wife has taught me so much, I have been down so low, but have had some wonderful support to prop me up when I’ve needed it… which has been frequent, and I have learned much about mental illness, about people and about myself.

This has led me into a new life, working with Mental Health Support Groups and the Adult Mental Health Service, without it I probably wouldn’t be on twitter (some of you may see that as being an improvement mind you…).

I have made many new friends and find that when I go to events and meetings, I am welcomed, respected, and dare I say looked up to… it has done so much for my self esteem and confidence. I have been spokesman at events, I have talked for 90 minutes to a group of carers, attended the Care Crisis Lobby in London and harangued my MP’s PA for nearly an hour… I couldn’t have done any of that before.

I am not saying I am glad about the mental ilness… there is not an hour goes by when I wonder if I could have done something to help Jane, to prevent this bloody awful situation… I pushed for hospital admission for her, and will never lose the feeling of guilt over that when I think of the look of betrayal on her face… But I am probably now in control enough to think I could have lost her through cancer, accident or a million other causes, none of which would have put me through what we’ve been through, and I would right now be sitting here, lost, lonely (lonelier I suppose) and without friend or support.

The fact that she had a mental illness has taught me so much and opened a door to a new life, a life that 5 years ago I couldn’t have foreseen, but which is bringing me great satisfaction in the brighter moments between the fits of apathy, turmoil and misery I am still experiencing

For a sufferer, I am primarily a carer, so many people I know have been able to adapt in recovery or remission, accepted the limitations, driven themselves less blindly, and appreciate more what they have, appreciate the really valuable things in life.

If more people could have that enlightenment, see the same things that mental illnesses have shown many of us, then maybe, just maybe, the world may improve for everybody.

Thank you for the constant inspiration… you know who you are

Improvement in Service

It is lovely to be able to write an optimistic and up-beat blog about the local Adult Mental Health Service (LPT), and that is exactly what I’m doing. I have been one of the harshest critics of the service provided, in the community and on the acute wards, and my complaints to the Trust eventually covered around 40 pages. So, the treatment we received was disgraceful. I have taken the complaints to the Trust, the CEO Officer and latterly the General Medical Council, and by digging my heels in at every stage I have succesfully encouraged the introduction of some 14 amendments to policy and procedure, and have sat on three committees with the LPT and believe I have been able to influence some improvement.

The first, and main, project, was called Improving the Patient Experience, for which I am on the central CORE committee. In simple terms this programme put carers/service users together with a professional service provider to talk in detail about their experience within the LPT. The professionals were not allowed to challenge the carer, not allowed to problem solve or defend the service. From these conversations we have put together a list of points that the LPT deliver well, and need to develop, and areas where improvement is required… a great deal of improvement in fact.

We had a meeting last week to look at a draft of the new handbook which will be used to train the whole of the staff, around 300 individuals in the Community and Specialist teams, with the Acute Wards to be followed up next spring.

There is a lot of work required to fine tune the document, but we are meeting again this month to sign off the finished thing. I will then be undergoing a training course to train me to deliver the final training to the staff… something I am really looking forward to.

The demands that have come out from the sessions are wide ranging and when implemented will make a significant difference to the care given to both service user and carer, so this will have been a really worthwhile experience, not only will it bring about a better service, but it has given me so much confidence and belief in myself, and raised my self-esteem.

It has also been encouraging to work with a group of senior managers and service providers in the LPT and see the determination to improve things, and the commitment with which the staff are engaging with the process.

It bodes well.

The other projects I have been involved involve assessing the merits of staff achievements when nominated for staff awards, and a review panel considering how they can improve the service and standard of response to complaints, I feel that both of these projects will add to an overall improvement within the service, and also give me a better insight and more confidence about how the LPT are looking to improve, which I can share with colleagues with the support groups I volunteer with.

And thinking of volunteer groups, I have been somewhat down about the way the group I represent was going, it is a bit old school, and not really very dynamic, but I am now involved in some other projects which fill me with excitement…

I attend the LINk Mental Health Group, which is currently flourishing and making real progress.

A good friend of mine is a Samaritan, and they are looking to set up a practical carer support, which I am talking to them about, and sharing my experiences with them.

The final one is a fantastic new project, called Labelled for young carers, which I have written about before, which was established by some friends, young carers and service users, to support young carers, who have so little support from any other quarter. I am getting more involved in the activities of this group and look forward ot blogging about some real successes in the coming weeks and months.

So, a terrific set of initiatives really taking off in this area, real practical support for young carers, who can more easily relate to people off their own age, practical support for all carers, and a real improvement in the service offered by the LPT itself. After all, if they get their service to be perfect, and inclusive of the patient and their carers, everyone’s life becomes so much easier, which is something we all have to aim at.

So, if any of these sort of initiatives are happening in your areas, please try to get engaged, the results will make it so worthwhile…

It is so good to be able to say something so positive!!