2011 a rotten year

As this year of 2011 draws to a close, it is a time to look back at what the year brought, and to look forward to what the next year may bring. To be honest it doesn’t make good reading. I will be so pleased to see the back of this year, it has been one of the worst I have gone through, and the future doesn’t, on the face of it, hold much better, it not all bad however, there have been some good things and hiding deep beneath the soil, under the snow, there are signs of life, reasons for optimism. Like all such signs, it is now up to me to nurture them and make the most of them, and I hope I have the strength, judgement and courage to do it.

As the year starts Jane has been in hospital for 18 months, the performance of the Adult Mental Health Service has been disgraceful, from the delivery of care on the ward, medical support from the doctor and complaint handling process from the CEO and his directors. I was unable to sit in a room with her consultant without my legal advocate in support. I am going through Carer Education Training Programme learning about Mental Health and how to cope with caring and on the edge of a total breakdown. Not an encouraging start for a year.

I was going to various events with local voluntary mental health support groups, partly for the support I was receiving and partly to start to campaign against the inadequacies of the AMHS and County Hall, and at this point met John Wallington, Chair of a local Carer Support group. After a couple of conversations I was invited to join the Management Committee and embark on a life of Mental Health Support.

However, the main emotion at this time was depression. I was heading deeper into depression, was unable to look after myself properly, clean the house and was starting to have bad thoughts. I daren’t drive alone at night because of the temptation to pull into the traffic coming the other way.

I was persuaded to have a week away, and went to spend time with my cousin in Christchurch. This was a turning point for me, I remember sitting on the bank of an estuary, with the sun setting behind the reed bed and the waders drifting in to roost on the mud flats. This was a turning point for me, I saw the beauty of the world again, understood the majesty of nature and started to feel much better about life.

The next morning I had a call from the hospital to say that Jane was being transferred from the ward from hell to a treatment and recovery unit, which I knew to be excellent. This removed a major problem for me, I had never felt her safe on the ward, never had confidence in the staff and had total contempt for the consultant. This move was so positive for us, and I was able to put the black thoughts behind me and start to recover.

I was now fully involved in Carers Action, had gained knowledge from the Training programme and starting to fully understand the advice and support I was getting from my Carer Support worker. The treatment Jane was now receiving was exemplary, so I was improving daily.

At this point things at work started to deteriorate, I found I had to work every weekend, without a break, just four days a week, but every weekend. Now this wasn’t a problem initially as Jane was in hospital anyway, but after a few weeks I realised it was affecting my life, without the weekend I wasn’t seeing the grandchildren, wasn’t able to meet friends for a coffee, or even follow the football. This may sound minor, but was starting to really hurt.

During this time Jane was not showing signs of recovery, she was still unable to communicate, but was at least now eating and drinking properly.

As the summer wore on, I was starting to feel a bit calmer about things, and was pushing my complaints harder and further in search of answers, more importantly in search of improvement.

After a great deal of pushing, ranting and cajoling I met with the new director of Adult Mental Health Services, and was invited to participate in a programme of “Improving the Experience” later in the year.

By now I was deeper involved in Carers Action, attending events to represent the group, taking the message of support into the community. I was also getting involved in Leicestershire LINk and joining their initiatives.

So, I was getting busier working for mental health support, through this process I was meeting many new people who I am now delighted to call friends. I was also meeting people involved in Mental Health Campaigning via Facebook, and becoming close friends with them as well. I even started to use twitter, and found myself following and being followed by others in the same sort of situation, mental illness sufferers, carers and professionals. These contacts have inspired me and I know I am in a position to continue the work, and need to do so. It has given me a real purpose for the first time in my life.

Around this positivity my wife was still sinking deeper into whatever condition she has, there is still no diagnosis, and showing no sign of recovery. Conversation was impossible, she was unable to communicate and has little memory or recognition.

I was starting to believe that recovery was simply not going to happen, but the doctors were still talking of recovery.

As summer moved into autumn, the situation at work had deteriorated to total misery, I was pushing harder and harder for a solution, and a solution came, not necessarily what I wanted , but a solution. I was being made redundant. I knew that if I was not working I could not afford to pay the mortgage, so things were looking bad.

I took my courage in both hands, made an appointment with the consultant and asked for an honest appraisal of Jane’s long term condition. It was not a happy conversation. Although there was no diagnosis still, the long term was not good, it was made clear that there was not to be a recovery and Jane would never be able to rejoin the community and come home.

This was obviously a devastating blow.

So, we are in mid autumn, I am to be out of work at Christmas, my wife will never be coming home to live, and I have to sell the house and downsize to afford to live. I fairly difficult situation I think. To crown it, I had also been diagnosed as being diabetic amongst all of this.

I had two choices, sink under the pressure, give up, despair or to see it as a new start… I took the positive view. I owe it to Jane to achieve improvement in the AMHS, I will fight this cause as long as I am able to, it is important for me and for thousands of others.

I am obviously devastated about losing my wife this way, so many of our dreams have been blown away, my heart bleeds because she is unable to enjoy her gorgeous grandchildren, I don’t know what quality of life she has, is she happy, content, does she have any emotion or feeling, she cant say, I don’t know. My heart is broken into a thousand pieces but I know I have to carry on, and I am devoted to the cause of mental health support.

Due to having a great deal of holiday, I was able to finish work in November, and the difference it made is phenomenal, I have been feeling so much more relaxed, in control and happy. It is a mixture of now knowing and accepting the situation with Jane, and taking a major stressor out of my life.

I am now working on the Improving the Experience programme, working with LINk on the new acute pathway plans and working with Carers Action to get carers more involved in the processes, and to get them the proper level of support.

As the year ends, Carers Action is about to take a higher profile, partly through my influence, I am due to attend a host of meetings on Improving the Experience and Acute Pathway projects, am tweeting and blogging regularly about mental health issues and have a real commitment to the cause.

In so many ways life is positive. I have a cause to fight, I have many new friends and acquaintances, new interests in writing and tweeting, the support of a wonderful family and friends, and from the carers support groups.

However, all of this is put into place by the situation my wife is now in. She doesn’t deserve to be going through all of this, doesn’t deserve to be afflicted as she is, didn’t deserve to be mistreated as she was by the hospitals. My heart bleeds whenever I think of it, and I think of it often.

My life has been totally bound up with her for some 38 years, I have now lost her but have the pain of knowing she is still there, but just a shell of the woman I love, we cant be together other than for fleeting visits, can’t have a proper happy life and retirement, those dreams we had will not now happen.

So, at the end of the year, as we approach New Years Eve, I am torn. I have many new challenges, all of which are exciting, many new friends but on the other hand I have lost the thing I love most.

How do I feel, I am devastated. Mental Illness is a destructive force, it destroys sufferers, their families, it never goes away, it drains every emotion and resource we have… and yet it is the Cinderella of conditions. It gets little or no publicity or support, after all it is a taboo subject because of the perceived stigma.

We have to change that. We have to raise the profile of what mental illness can do to people and families, and we have to work to improve things for sufferers and carers alike. We have to educate the public to make them understand. I have a role to play in that, and will play it to the best of my ability and strength as long as I can.

Only by doing that can I cope with the loss I have sustained, a loss which has robbed me of the best thing in my life, my one true love. I will never forget that, and will do all I can to change things. It is too late for us, but I have to make it better for current and future sufferers.

That is my pledge for life.

County Council Carer Stategy Consultation meeting

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.

The Impacts of Mental Illness

Writing about mental illness, is not easy, it is an emotional subject and really just about the last taboo. It is not something people talk about, or even acknowledge in any serious way, but one out of every 4 of us will suffer mental illness during our lives, many more of us will be directly, and devastatingly affected by mental illness.

So, what is mental illness? It is just that, an illness, only the part of the body affected is the brain. With most other illnesses the patient shows outward symptoms, a heart attack, cancer, both normally have obvious outward signs, whether in the look of a patient or the fact that they lose weight, cant walk far… with an injury there are the obvious signs, the plaster, the sling, the crutch… an observer can identify there is a problem, and has an understanding of what it means.

If you are a carer for someone with a physical illness you get sympathy, and rightly so, because when you are a carer it is a full time job, it doesn’t stop at 5:00 pm. If you care for a patient with a mental illness, nobody knows, the signs are not obvious, unless they are beyond the extreme edge of the illness.

Once someone identifies a person as mentally ill, they can become very defensive, it looks aggressive, because they don’t understand, they think the ill person is a little strange, or a lot strange, they don’t see it as an illness.

I am a great admirer of the work done in the care of cancer patients, in cardiac work, and the ease with which broken bones can now be mended, it is magnificent work, carried out by gifted and dedicated experts. We see the evidence so often in our magazines and papers, on our tv screens, on a advertising boards. There are massive organisations sponsoring major events to raise money for sufferers, and for the scientists who achieve the great break-throughs in treatment. We’ve all seen them.

How often do we see the same sort of campaigns for the mentally ill? How often do we hear of major break-throughs in treatment.

In fact, how often does anyone talk about mental illness. We don’t know about it. We all know people who have had, or got, cancer, who have suffered heart attacks. Very few of us know anyone with mental illness. Is this true? One in Four of us suffer at some time from mental illness, but as we have said, there are not always the obvious signs, and we don’t tell people do we? It is to protect them from the embarrassment.

Most people who know me now wont know I have suffered from mental illness.

My wife has been suffering a depression for some 7 years now, not always bad enough for hospitalisation, but always suffering, because it robs you of your self-esteem, it robs you of your confidence, it can rob you of your ability to work. You appear to be a benefit fraud because there is no crutch, there are no tell tale signs. This takes away the last vestige of self confidence.

My wife has been in hospital for 2 years now, two years in which she hasn’t had the motivation to look after herself, I don’t mean she has not bought designer clothes or the latest fashions, it hits at a much deeper, much more sinister level. For two years she has not been able to eat, to drink, to wash, to change, to clean her teeth… can you imagine, really imagine what that does to a lady who has always taken care of herself. She has lost weight, the failure to drink puts her kidneys and liver at risk, the dehydration also causes confusion, which simply increases the depression. Things get worse and worse, she is unable to speak, to communicate, she cant cry when upset, we don’t know if she is capable of being upset. She cant laugh when she is amused, we cant tell if she is capable of being amused.

We don’t know what is going on in her mind, there is no outward sign that anything is going in, certainly nothing is coming out.

Is the person the only one affected by this illness. Of course not, there are many knock on effects. The carer is all to often left unaware what is going on, is not kept informed by the medical staff, often because they have no idea what is happening, what the problems are.

The pressure on the mental health carer, whether their loved one is at home or in hospital, are immense. You cannot leave them on their own, These patients have lost the drive to look after themselves, they could do something to put them in real danger, either deliberately, or by lack of understanding, lack of confidence, confusion,

Of course for both the service user and carer social life ebbs away, the service user cannot mix socially because they cannot communicate, have lost all of their social skills. The carer can’t have a social life because they are exhausted, mentally and physically, by the ravages of the stress of caring around the clock, around the calendar.

Invitations stop coming in, because people know you will say no anyway, friendships end because you drift apart, the friends are frightened of the mental illness, it is harrowing to visit someone in this condition, and you just cant do it unless you are very close, such as husband and wife, parent and child. It is too much to ask others to be involved.

So after a relatively short period the service user is stranded in a bleak and frightening world of psychotic images and loss of all self esteem, the carer is exhausted and can do nothing but visit hospital, look after their loved one and sleep. Two lives are at best on hold, at worst irrecoverably destroyed.

The worst feeling is that you have lost your wife, she will never be the same again, but there is no mourning, no closure, the suffering goes on eternally, and no-one knows what recovery will bring, it will bring major changes for both parties, there is then the challenge of readjustment and coping with that.

There is really no end to this illness.

I am not asking for the earth. If we could remove the stigma from this illness, it is not normally an illness brought on by lifestyle, but more often by circumstance over which you have no control, and start to talk about it. Get people to understand the pressures of suffering and of caring, maybe then we can minimise the fear, understand more, and do more to help each other.

Remember, as you read this, one in four of you will suffer this kind of illness, when it’s your turn, would you prefer people to give you a wide berth and ignore you, as many of you do to current sufferers and carers, or would you rather we all support each other.

I know what I’d prefer. Please, try to understand things, try to help, and maybe we can improve the lot of the mental health sufferer and their carers.. It is a very hard, challenging and distressing situation