Welfare Bill and Ongoing Support

As a carer for a wife with a mental illness, I knew that life would change for both of us… I also knew it was not going to be easy. It was not going to be easy for me, not easy for my wife.

Now, there is an understatement for you!!! I couldn’t believe just how hard it was going to be for both of us, and all the family, all our friends… so called friends, they tended to run away. Friends I am making now however are of a different sort… they know the situation we are in, they accept it, as I accept their situations… with compassion, understanding and no little humility… there are people suffering beyond my wildest imagination, and my heart is with every one of them.

Sadly, I don’t think that the people who are supposed to be looking after vulnerable people see it that way. They seem to see mental health patients and carers, the most vulnerable of people, as an easy target to neglect, abuse, punish and cast away as an old dress.

Locally, the Adult Mental Health Service are designing a new Acute Care Pathway, defining how people should be treated from initial diagnosis through all aspects of the Service, both as an in-patient and a n out-patient. I have to say that the pathway has a lot to commend it, the Trust is making great efforts to understand patient and carer requirements from the service, and I believe that once finalised this Acute Pathway will make a huge difference to all of us, will be a major step forward.

At least, that is the theory, I genuinely believe that the Adult Mental Health Trust is trying to understand its shortcomings, trying to work to put them right, and you have to commend them for that, but, as they say, the proof of the pudding will be in the eating.

They can only achieve their goals if they have the resources to do so, and increasingly, that is simply not the case.

In my local Trust there are simply not enough acute beds to cater for the demand, to counter this problem, they encourage carers to take patients out on day release, weekend release, and when they come back someone else has taken their bed, which means the patient cannot return to the ward. If they are lucky they will find a bed elsewhere within the Trust, which means turning out someone who may already feel rejected, confused, lost… it is hardly in their interest to be shuffled out is it?

The alternative is for the carer to take them home again… but does the NHS check if the carer is able to do so… what do you do if you simply can’t cope with having them home overnight, or for an extra night… it is a hell of a strain on the carer. Then to be asked, in front of the loved one, can’t you take her home again tonight?. What can you say… it is emotional blackmail and you have no choice but to pay the ransom.

Once discharged, the patient will need support, will need somewhere to go to help to reintegrate into society. The day centres are closing, the support services are losing funding, along with the rest of the world are suffering cuts, and like most organisations, the easiest commodity to lose is staff… not cut out the waste within the service, then adjust the further cuts based on that. This means that the support, who already have case books too large to deal with them effectively have to take on even more, reducing there efficacy even more… not their fault by any means… but they are the front line, so they get the blame.

As for respite care for the carer… well, if you are really lucky you can get 8 hours a week, 2 half days. It is already a monumental task for a carer to look after someone with mental illness, but if you have to cope around the clock, seven days a week, it quickly grinds you into the ground… I have seen too many carers become service users because of this situation. Of course this is an additional cost to the NHS, probably far more expensive than employing the people needed to look after the original patient to start with, and of course someone still has to care for the original patient.

I am delighted that the Adult Mental Health Service is bending over backwards to understand and accommodate improvement, nothing but credit for them, my fear is that ill-advised cuts instigated by a government who seem intent on punishing the most vulnerable will prevent them achjieving their aims, and make the situation even worse for carers and their loved ones.

Once again the blame will fall on the local health trust, but in our case they are doing so much to improve things, but it seems they are going to be thwarted for a political expedience… This cannot be acceptable

On-Going Care Plans

Sometimes when I get angry, it is a totally different subject I get wound up about and write about… but this isn’t one of them.

In January 2010 my wife had been in an Acute Psycjhaitric Ward for four months suffering with acute psychotic depression, and then was allowed home on home leave over Christmas and extended into New Year. We had a ward round and she was discharged, no preamble, no discussion, just you are discharged.

The consultant also said if we had any problems we could get support from both the Community Unit and the Acute ward she was being discharged from

If I had known then what I know now, things would have been different, my wife may not now be in the desperate state she is now in, because she may have got the proper help at the right time.

What do I mean by that… like many carers I didn’t know there should be an agreed, documented Care Action Plan detailing on-going treatment and support in the community.

As it was we had an occasional visit from a CPN, and an outpatient appointment with a junior doctor.

The CPN was so understanding, phoned my wife to say I am cancelling my appointment as I’ve spent longer with someone else than I meant to… now I understand spending longer with a patient when needed, but phining someone with depression and saying effectively “I haven’t got time for you” is not exactly good care practice.

The junior doctor changed her prescription and gave us a month’s worth. They arranged to let our GP know so we could collect the next one from them rather than from out-patients. We collected the next prescription a month later and guess what… the new details hadn’t been passed on.

The outpatient people wondered why we were annoyed, 4 weeks is not long enough to let the GP know, it normally takes up to 7 weeks. I will not comment on that. As my wife was taking 20 tablets a day at that point, tablets for 28 days amounts to 560 tablets.. all of which had to be flushed down the loo while we went to outpatients to get the correct prescription.

At this stage my wife started having seizures, they terrified me, it was awful, I couldn’t do anything, she was in a state like that for 6, 7 hours at a time, almost daily.

I asked for help, begged for help…. The crisis team said, while we were in crisis , don’t worry, we’ll be coming in a couple of days anyway. Social worker said “if she’s that bad, I wont come, you can see doctor next week”,  CPN said “I’m busy” Community Centre said thar it was nothing to do with them, so go away. The acute psychiatric ward said the same, but said go to A&E, at A&E we waited nearly 8 hours to see a psychiatric doctor, who simply gave me a bollocking for wasting her time

So much for support…

At the end of February now, and I got angry with the Doctor and Manager of the Community place… ranted… there response was to do nothing but write the Care Plan then, showing all the services we should have had but were never offered, as though they had been put in place from day 1. They expected my wife to sign it despite the fact she didn’t remember what happened the previous day at that time… let alone six weeks earlier. They expected me to sign it despite the fact it was total bollocks, even had date of birth and date of admission wrong… that caused a bit of a fuss!!!

So, you ask, why am I so bloody angry about this today, two years after the events, well, I’ll tell you.

Last weekend my friends mother had a stroke, was admitted to hospital to be checked and presumably restored. She was discharged next day, discharged to home where she couldn’t get up and down stairs, couldn’t prepare food or drinks, wouldn’t eat or drink, needed around the clock support, but her daughter and son-in-law had jobs to do, and couldn’t be there around the clock… oh, of course no asking if discharge was practical or achievable, it was assumed…. So home she went, and the carers were again put under unreasonable pressure to do the work that the NHS should be doing. Incidentally official figures show that Carers save the NHS £118 billion per annum. Wouldn’t that alone justify treating them with some respect… apparently not.

Suffice it to say, that the next day she had a fall, broke a wrist and was taken to A&E, where she continued to be treated for a broken wrist despite having another, bigger stroke at the time. Eventually the family persuaded the staff that she had had a stroke and dealt with  it, at the expense of treating the wrist

She was readmitted and despite the fact that the two strokes were barely more than 24 hours apart, there was apparently no connection between the two, presumably justifying the early discharge without checking the situation she was being discharged into.

Whilst in hospital, the lady was catheterised but was in pain. The family told the staff that she was prone to water infections, and eventually persuaded them to check. The staff confirmed a water infection.

So, here is my point, two years apart, two incidents where a patient was discharged without an acceptable care plan, without even advising the carers that a care plan was required, in both cases the patient suffered further and more damaging problems.

Two cases where discharge was ill considered, contrary to the needs of the patient and carer, and with no credible support available for anyone.

If anyone thinks these two incidents are unique, you are being either naive or ridiculous, with the number of such cases I have been told about, it would appear to be virtually standard practice

It is a disgraceful, damaging, callous process, aimed I imagine, at massaging statistic to fit the governments ill-considered standards. Another statistical game played at the expense of the patient and carer, who are simply commodities, statistics to falsely prove the achievement of statistics, nothing to do with care or support of vulnerable people

This kind of behaviour by the NHS is totally unacceptable, it is damaging to patient and carer and will lead to carers being admitted as patients though exhaustion or stress.

The forthcoming cuts will save the NHS money in the short term, but as services deteriorate even further, more people will be readmitted with more serious conditions than before, more carers will be so worn, stressed and exhausted that they will become service usaers themselves, adding even more costs to the NHS, more competition for beds and services, and the spiral will continue, deteriorating rapidly on a daily basis.

We cannot sit back and let this happen… fight all the way to prevent the cuts impacting even harder on vulnerable patients and carers…. We have not asked to be in this position and surely deserve more respect and better support than is currently provided, let alone when it is reduced further by the cuts.

Loneliness

This world's a lonely place to walk around in,

This world's a place where life is hard to spend,

But we can help each-other live, Everyone can give

The simple gift, the words that lift, "Be My Friend"

Some days you wake up feeling nothing but fear,

Some days you wonder why God put you here,

Then all at once there comes a word, what was that you heard?

Why, someone said from Gilead, "Be My Friend"

This life may not bring much of comfort to you,

This world may lose it's touch of kindness too

And who's to blame? Why can't you see? Only you and me,

So if I may, I'd like to say, "Be My Friend"

I make no apology for starting this blog by quoting the lyric of David Ackles’ wonderful song “Be my Friend” as it has been one of my best friends since 1968 when I first heard it, and this blog is about loneliness, the painful, debilitating loneliness that comes with mental illness, either as a carer or sufferer.

I grew up in the fifties and sixties in a broken home, I loved the Beatles and Stones when they came along but was too young, chronologically and emotionally to be a part of the swinging sixties, although I loved the music and trappings. In 1967 however, a second, more exotic revolution overtook youth culture and I embraced it fully. The “Summer of Love”…the music, the art everything, about it. Except in my case, the love part, I found it difficult to form relationships, impossible to form relationships with girls under any circumstances.

The result of this was that I was going to live music events, films, poetry readings and the rest (and indeed football) as often as I could. I got to see many legendary musicians and poets, read to distraction but… always on my own. I rationalised it at the time that I was better off going on my own because I didn’t have to worry about whether someone else would want to go, to stay so late and all the rest… of course I realise that wasn’t true, it was because I couldn’t form relationships, friendships, didn’t know how to. I was lonely, I was also bullied through much of this. This loneliness however was nothing to what I felt as my wife’s mental illness grew in strength in recent times.

I did get out of the ‘loner’ role however, by meeting a couple of people at work who were more, shall we say, outgoing. I started to drink and use other stimulants and soon lost the diffidence, started to become a “leader of the pack”, able to talk to people, started to form relationships… of course this was all heightened by the stimulation I was using, and when I stopped, and cut down my drinking in 1975 I was sort of normal, but I still found it difficult to start new friendships, could always talk to people but could never instigate things, could’t say “how about going out for a pint” or whatever, though I always responded positively when I was asked.

I still fear rejection and still find it difficult to start new friendships unless I am asked… I rarely make friend request on facebook for fear of rejection.

That is all by way of a preamble…or probably a pre-ramble. Let’s get on with the connection to mental illness issues.

My wife suffered from clinical depression in 1984 and 2003, never fully recovering, and the things I want to record here were evident in both of these illnesses, but I will concentrate on the latest illness, which started in 2009.

2009 started quite optimistically, she was feeling ok despite losing her mum the previous years, but a number of incidents started to push her to the edge, the depression so long relatively in check erupted over a few days around our daughters wedding. Through July and August her condition deteriorated, I was working part time and whilst at work had to get my mum in to look after her, I had to be with her around the clock other than whilst at work.

What was the impact of this around the clock care over two months… my wife was unable to function normally, was withdrawn almost fully into herself, conversation was impossible, and she couldn’t concentrate enough to even watch the simplest stuff on tv.

For me, I was unable to really do what I would normally do, couldn’t chat with her, couldn’t read because I was too worried, couldn’t go out because I couldn’t leave her, she was worse in the evening and at night, often having catatonic seizures which I couldn’t ask anyone else to deal with, not that I was qualified. The NHS and Mental Health Service were not interested. So I couldn’t go out, the normal phone calls and emails asking me out for a beer were all greeted by “sorry, can’t make it”.

I was growing tired, the pressure was telling.

Eventually she was admitted to hospital, in the absence of any advice to the contrary I assumed that the admission would be a matter of weeks, or maybe even a couple of months. The hospital is only 10 minutes drive from home, and also on my route to and from work, so I got into the habit of going every day… either on the way home from work or early afternoon if not working.

Now, when you are visiting this often you have little energy or time for a social life, it is wearing and when you are getting home around 9:00, having a take away or ready meal your health is going to start deteriorating and are going to be losing energy and stamina at a rate of knots.

So, the remaining invitations I was getting were now drying up because people knew I was otherwise occupied, was not myself and had started to talk about mental illness as a main theme. I am lucky… I have a couple of very dear friends who I visit once a week, they live locally, and I was able to continue that relationship and keep my grip on reality.

Of course apart from that I was not able to go to the cinema, concerts, go out walking or do anything I would normally have done with my wife. I was becoming robotic… home, work, hospital, home, food, bit of stuff on computer bed, work… I was losing contact with people everywhere.

When I did speak to people my situation, more importantly my wife’s situation, was the only thing I knew about, the only thing I could talk about. People got bored, the last people I was in communication with were slowly disappearing, and I was getting more and more isolated. I have a wonderful supportive family, but you need something outside that as well, or am I being greedy?

I learned at work, or with the family, that you don’t have to be alone to be lonely. I had thought that the period in hospital was likely to be up to a couple of months, I wasn’t to know it was going to be three years and counting, indeed we now know it is for ever… It was necessary to reduce the number of visits, yet at a time that my wife was getting worse. This meant that to my other woes, I was feeling guilty about leaving her in hospital, which is was proving a soul destroying experience, which was in itself wearing.

I now had more time to go out, but by now I was exhausted, the remaining friends I had were slowly filtering away, but I had less inclination to go anywhere… I just need to rest and lick my wounds.

Time went on, I was getting more and more that I would not leave the house other than for work so I was seeing people less and less, I was conscious of the need to stop talking so much about mental health issues, but had no other conversation. Isolation.

This situation just grew and grew over the first two years, when I was getting no professional support from anywhere, didn’t think anyone else was in my situation and simply had no-one outside the immediate family to talk to, and of course those conversations were all about the same subject.

I felt so alone and isolated that my confidence crashed, I was absolutely on the edge, and was starting to have black thoughts, it seemed a good idea to meet the headlights coming the other way head on, it would solve a lot of my problems.

So, having now become totally isolated in my life as a result of my wife’s illness, I was feeling so lonely, so in need of a friend. My best friends had issues of their own and although they were supportive they had too much of their own to deal with.

So, things were at the bottom, I was feeling alone, even though I probably wasn’t. At least there was no-one in the darkest hours, no-one when I suddenly had a down period and desperately needed help.

It looks all bad, but for me, at least, there is some improvement. I became involved with Rethink, their Carer Support worker has been a true goddess and brought me back into the world, I have also met many people in a similar position to me, and I now work with them in a carer support group, I also do a great deal of mental health support on a voluntary basis.

But this is not necessarily the happy ending I would have liked. My wife will never leave hospital, I have started a new life that she is unaware of, a life of caring and supporting mainly in the mental health field, and have made many new acquaintances as a result. Sadly, for me, I am unable to convert these into friendships, because I don’t have the confidence or self esteem even now to say “fancy coming for a coffee and chat”, because I am terrified of rejection. I also feel guilty finding new friends when my wife can’t, I feel guilty having any sort of life away from her because I know that she can’t do that. I know that she would want me to, she would want me to live life properly, but I find it so difficult, feel so selfish and guilty about it.

The feelings have all been amplified by the loneliness and isolation, that has left me feeling so guilty about being able to carry on whilst my wife lives the life that fate has now given to her. She is incapable of getting washed, dressed, eating, communicating, watching tv… cant concentrate and has no memory. I don’t know if she is happy, or if that is a concept she understands now… it is so distressing and leaves me feeling so isolated and despairing.

Now, I sound really self-pitying, I know that things for my wife are bad beyond any recognition, none of us can start to imagine what life is like so locked in over three years, and potentially for another 30 years… it is beyond my worst nightmare, I have had it tough, but for her, so much worse.

What I am trying to say is really that mental illness destroys the sufferer, it destroys the carer. I don’t know if time will ease my feelings, but until it does I cannot have a fully realised future.

I have been called courageous, I don’t think I am, but I am damned if I am going to sit back and accept my condition, I intend to do all I can to rebuild a full life, relationships, self-respect but I will always fully support my wife in her condition.

It is so good these days to have the use of facebook and twitter, where you can find many other people in similar situations, and my experience is that there is a damn site more support among people using these outlets than you can ever get from the Mental Health Service, and I am delighted to be able to contribute to that network in my modest way

Of course loneliness isn’t only the preserve of the mental health sufferer and carer, old folk can suffer indescribable loneliness, they have seen their families and friends die around them, find it harder to get out, it takes all their concentration to do their errands and simply walk that they can shrink into their own world, isolated although in company.

Music has been so important through my life, and I will end with a quote from John Prine:

So if you're walking down the street sometime

And spot some hollow ancient eyes,

Please don't just pass 'em by and stare

As if you didn't care, say, "Hello in there, hello."

Please, lets talk to each other, be open about our feelings, and enjoy the support that is out there for us if we care to seek it. Maybe then we can overcome the stigma in these situations and help the most vulnerable people in our society to be as involved, and supported in life as they deserve to be.

Funding 26/01/2012

Everybody blames all the crap on the cuts, or the mess the previous administration left, or the bankers… or some other group, I have avoided that so far, but sometimes you have to jump on a bandwagon.

I think most of us, as I do, applaud the fantastic work done in cardiac relief, cancer care and other major physical illnesses. I also deplore the lack of support for such as Motor Neurone Disease, Multiple Sclerosis and other such tragic conditions. I know that there has to be an economic factor in the fields of research and development, and that there are relatively few sufferers of these conditions, so for the good of the majority they take a back seat to the relatively common cancer and cardiac problems.

I don’t condone it, not by a long way, but I can understand it.

Now, let’s consider Mental Health, more accurately, Mental Illness. Latest estimates are that between 1 in three or four of us will suffer mental illness of some kind in our lives. Some will be relatively minor, have a recovery and remission. Many others will last for a lifetime, be totally devastating for the person and their family and friends.

Mental illnesses can be so frightening, so devastating, so utterly indescribable, and so damn lonely… and whatever, dear reader, you say there is a totally unacceptable stigma attached to mental illness, that is why you back away from it, don’t try to understand it and are frightened of it, you blame the sufferers and often call them freaks, druggies and countless other less pleasant totally undeserved names.

People with Mental Illness are first and foremost people, people who are suffering horribly with uncontrollable symptoms that no paracetamol, plasters, lozenges or antibiotics can even come close to easing.

If you haven’t been involved you can have absolutely no concept of how hideous, destructive, painful and tragic the situation can be. Imagine waking up in turmoil, with no hope, feeling devastated by everything, unable to cope with anything, unable to find the commitment to get out of bed, unable to stop crying… imagine that being your lot every day of your life. Little wonder that so many see the only way out is to end it all, or to self harm because the physical pain may hide the mental pain for a while. Not a pleasant thought is it… but countless people, for many young people with much to offer society and the world, as well as many people of every age, this is their lot in life, not for today, not for a week, but for life.

Don’t think that Mental Illness attacks people with particular lifestyles, particular age groups, particular races, religions, or sizes. Every single one of s is susceptible. If you think otherwise you are deluded.

So why is it then that Mental Health gets so little support, publicity or funding, why is it the Cinderella of the Mental Services. There could be an argument that in-patient, and indeed out-patient mental illness needs colossal commitment in terms of support and care, which in turn costs money. There is an argument to say that, but it is nonsense.

All too often acute units return patients to the community without a proper recovery, with no proper care programmes in place and without proper family care available, and this is to keep the statistics looking good… it is better for the statistics to have a patient in for a couple of months, discharge them then have them back when they relapse, often far worse than at the previous admission, it is a false economy, it is a callous response to totally false government demands for statistics. Mental Health patients are not statistics, they are people, ordinary, very vulnerable people.

If they were treated more effectively they, and their carers, would not return to inpatient status so often, costing the NHS so much more than doing the job right first time rather than trying to achieve pointless statistics.

So, back to the cuts, I can only really talk about my local Mental Health Services, where medical care is the responsibility of the PCT and pastoral care is in the hands of the City and County Councils.

The County Council does not acknowledge there is a difference in the care and support needed for mental illness as opposed to physical, which means the needs of mental patients and carers are not fully addressed.

As a direct result of the recent cuts the County and City Council are removing all the funding from the voluntary sector patient and carer support groups, which will put all of their existences at risk. Without these groups the patients and carers will have no-one to fight their corner. I have already said that the County Council does not understand the needs of Mental Illness, so they will continue to short change sufferers and carers through ignorance, and refusal to listen to the message the groups are giving them…. All to save money.

They will work with one commissioned group to look after all health care issues, but the funding is dramatically slashed, which means that the specialities will have no voice, no effective voice at least, and will suffer more and more.

Of course the risk here is that more and more will crack under the pressures, patients will be admitted to inpatient care more often and their carers will become service users themselves. We have already seen this happening.

Research into illness and disease is expensive, and funding will inevitably be reduced across the board. There should be a public outcry!!! Major physical conditions, cancer, cardiac and even eyesight, are such high profile, indeed so important that they will face minimal cuts, the cuts will happen with the lower profile conditions, such as Mental Illness, as well as MND and MS.

Commercial medical researchers will have to concentrate on the areas which will bring them the most public appeal and commercial success. Any guesses?

Mental illness is blighted by stigma, whatever I say, do or write, it comes back to stigma… because of that the subject cannot be openly discussed, sufferers and carers alike tend to try to hide their feelings and conditions from all but a select few, you only have to follow twitter to find countless people who are already in desperate need of a solution, desperate in their lives, it is so distressing to see their stories unfolding. Not only that but so many also suffer from bullying because their conditions are not understood.

In this financial climate is it possible to imagine that there will be any additional funding for an illness that is not understood, not talked about, that people are reluctant to even admit to?

Let me be clear, I have had a mental illness… am always at risk of a relapse. I have had many years caring for mental illness. I am not proud of it, but hells teeth, I AM NOT ASHAMED OF IT, any more than I would be ashamed of having the flu or a heart attack.

I will always try to be open and up front about it, and talk about it as openly we talk about other medical issues. Of course there are other taboo medical conditions, but I am not involved there, that is someone else’s argument.

No, the cuts will affect the whole range of services, but obviously the more popular, main stream and socially acceptable conditions will suffer less. This means that things like mental illness support will fall further behind in the pecking order, become even less known, but conversely lead to more people suffering, which will increase the cost of the service and of course reduce the proportionate funding for each sufferer even further.

Without the cuts, mental health support would continue more or less at is it, which is unacceptably low anyway, but when the cuts impact, the quality of the support will drop even further, probably even prejudicing the chance of actually doing anything at all for sufferers and carers.

Please, I know the government is totally out of touch with the people of this country, but could we try to make them understand that people with mental illness are amongst the most vulnerable and needy people in the country, they deserve to get full and proper support and treatment at all times. By reducing the level of support we condemn a huge number of vulnerable people to a hell on earth which they just do not deserve, and it is wholly unacceptable.

Finally, of course, the Olympics… while we are all (well some, count me out) gung-ho about the Olympics, have you considered how many charities and not-for-profit organisation have been put at risk, have to cut back their efforts or actually been forced out of business because their funding has been drastically cut as a result of the government cuts and the diversion of funding to the Olympics?

Hard day, but improving...

I normally try to be positive, after going through an horrendous year or two, despite everything, I was feeling really great… thats when life sneaks up on you unawares and kicks you down again., To be fair it hasn’t kicked me that hard this time, well all things are relative, but it has had a massive impact on me, such that I was nervous driving in the dark again yesterday, I have had these bad feelings in the past and thought they were gone forever…

I have had really bad days after a really good patch, and I just don’t like it, it has really thrown me and my confidence has gone again… so I need to put it down and get it out so I can move on again.

So what has happened…

I am currently unemployed and am working with the local Adult Mental Health Service and a Consultancy  called April Strategy, I am the care representative and one of the facilitators of the project. The project is called “Improving the Experience” and after a couple of months planning and training, booking venues and so on, we are now deep into a process named “In Your Shoes”. The events run for two hours, and how it works is that carers or patients come along and each is hosted by a service provider, could be anything from team leader, Manager, Nurse or even ancillary worker.

The service provider sits with the patient/carer for an hour and the listens to their story , They will also make notes of all the key points on post-its, the carer/patient has an hour to talk about all the good and bad experiences they have had in the service and attempts to define a perfect service provider.

Then after a break we get together in small groups and the professionals read out their post-its and we can group them, with everybody else’s into categories, and highlight the main them or success and failure, we then agree between us the main headings that the Trust has to improve on.

I have now told my story to 5 different people, it is a very tiring and emotional experience, but is also cathartic, you see the empathy, feel the support from your listener. At the end all of the points are raised and you realise others have the same sort of issues. All in all the feedback from everyone involved has been so positive, so encouraging, the service providers learn many things that shock them, here many things they expected to hear, but the main thing is that they take them on board and are taking positive messages back to colleagues.

I left Wednesdays event, my second of the day, on a real high, it so so good to have the staff listen to your issues, accept them and undertake to help improve.

So why the misery?

On Thursday I was due to attend a carer group to talk about the process, to encourage people I know have issues to come to a special big event where we were preparing to bring in literally dozens of staff to listen… The meeting was cancelled because the care worker didn’t show up. Only one other carer was there, so we had the meeting on our own… no problem there, a coffee and chat with someone I have got to know through the group over the last year.

From there I went to a Management Meeting of Carers’ Action, a Mental Health Carer support group I work with. Now I do have a bit of a clash with my colleagues, in that I use twitter, facebook, blogs, message boards regularly to tell my story, the story of so many thousands of carers who don’t have a voice, whether it is because of illness, lack of resources or lack of confidence.

My colleagues, and we are all no longer in the first flush of youth, are dead set against any form of interactive electronic communication, refuse to add to message boards oon the media because they are dangerous, and to be honest often are more concerned about upsetting the NHS or County Hall than in really supporting the carers. That said, we have achieved an awful lot over the last few years, but it could be so much more.

Thursdays meeting was not good, we have what many groups have, a number who speak good sense or stay quiet and a number who talk absolute bollocks and talk long and loud, and inevitably they carry the day when it comes to a vote. I left after two hours totally confused, we had made no decisions, although two of us kept trying to get back to the plot and ask for decisions, and I don’t think any of us took any projects or tasks away to do. It really was frustrating, and it got me down…

So Friday dawned, hoped for a good day, seeing my daughter, weekly shop, take my mum to the hospital for physiotherapy then visit my wife in hospital.

Earlyish in the morning, I got an email from the AMHS to say we had to cancel the special “In Your Shoes” carers event because we had only two people registered an interest in coming, we had long conversations and decided to reschedule it to run alongside another group to make it worthwhile.

I was thinking we are doing all of this to help these people and they don’t want to help us… I know it is hard to do it, it is difficult to talk about a bad experience in the Mental Health Service for an hour, but I know the staff are well trained to cope, and were so supportive and empathetic with everyone, that everyone who attended to talk went home happier and more confident when they left

I got the message out to all of my contacts, only one of whom had responded to my earlier emails inviting people to the event, about the rescheduling. Later in the day I got a message forwarded from the NHS co-ordinator, a bitter attack from the leader of a carers group, basically criticising me and saying we were being discriminatory and excluding the ones who wanted to go on that particular day.

Now, I woulod have thought that this Carer Support leader, who knows me, knows my story, knows about the depression and lack of self esteem would know better than to go effectively over my head and not involve me. That upset me immensely, another blow I didn’t need, on top of knowing the very people we are fighting for don’t want to cooperate.

These things, however, were not going to get me down, they were relatively small issues which I would cope with reasonably well at present.

It was the last thing that got me…

When I got to the hospital my wife was looking very sad, now she can no longer read, sew or do any of the things she loves, she cant get up and look after her washing herself, cant dress herself, needs help to eat, and worst of all can’t communicate now. We talk to her, have no idea if it is going in and registering, there is no clue.

We went and sat in a quiet room and I started to talk about the grandchildren, as usual, now I love my children and grandchildren to distraction, so does she, but she doesn’t seem to remember them without a lot of prompting, she was looking at a photo album we had done for her and I realise there were tears running down her cheeks.

She couldn’t say why, couldn’t say if she was upset… it is hard to witness that. Gradually the tears became a torrent, and she was sobbing. I got one of the nurses, they are all angels, and she came and gave her a tablet (lorazapam I think) to calm her. She continued to sob, no amount of hugging or comforting made it any better, didn’t stop the tears… gradually she fell asleep, but was still sobbing in her sleep, after 20 minutes, it was getting near to meal time, so I thought I should wake her and go, so she could eat… gently woke her and she continued to sob… the nurses helped, I couldn’t take anymore… look I will never walk out on her, never desert her but it is more than I can manage to stay with her any longer than I did when she is that bad.

I came home, put the shopping away and realised I was crying, all the little frustrations crowded in and I blamed them for my upset… but it wasn’t that, it is obvious why I was so upset.

When you have shared a life with a person for nearly 40 years, had children together, gone through a miscarriage and life in general you are close, and there is nothing worse than seeing someone you love in this condition. It is truly heartbreaking, you want to give up, you feel guilty for having a life while she is so ill and missing any quality of life, missing seeing her cherished grandchildren growing, and they missing a grandma… life can be so cruel, I always come away feeling upset, but when you are with her for 90 minutes, and she is sobbing the whole time it totally shatters you… it really has been too much for me again.

Last night, I used facebook and talked to a dear friend for an hour or so, started to come back to myself, and today have been subdued but starting to get things back into control.

I will be back at the hospital on Monday, strong again, and able to support her as she deserves, but I can only do that because I can write it out of myself like this, I have special friends who will talk to me, who understand, and a lot of support and encouragement via the social network channels.

So for everyone out there who has supported me in any way, everyone who have said kind and supportive things, everyone who has shown they understand, thank you so much, without you I could have gone under again… I am coming back, and I will carry on fighting the authorities to get a proper level of service for mental health sufferers and their carers, I will continue to fight the system to try to remove the stigma that makes life so hard for all of us….

Finally, I am here for anyone who needs someone, check out @mralbionman on twitter, make contact, and I will help as much as is in my power to do so.

Bless everyone out there who is lost and suffering, may the pain ease, and you find some comfort.

Whats in a Name?

How often have you heard someone do something trivial, say chip a finger nail, and say they are depressed about it? How does it make you feel?

For most people, it will have no impact, for anyone who has suffered clinical depression, or cared for someone who has, that comment can make you angry. Normally when I hear the comment made, I feel angry, walk away, try to ignore it… more recently I have actually reacted to the person making the comment, told them precisely what I thought, and how offensive the remark is.

Are you still with me? Then you probably have experience of depression, and I am with you, ready to help as much as I can. For the most part that is by fighting my battles with the local Adult Mental Health Service so totally screwed up my wife’s treatment and pushed me into depression feeling suicidal, and further my work with voluntary groups supporting mental health carers.

Hopefully some of my experience, which appears throughout my blog, will resonate with someone, show them they are not alone, show them there is help to be had and people are fighting for the cause. Maybe someone will be inspired to pick up the challenge and get involved themselves. It is at times frustrating, but also exhilarating.

Any improvements we can achieve will of course benefit, in some little way, every mental illness sufferer and carer.

I have often heard people referring to people who seem ‘different’, who have a mental illness of any kind, use the phrase “there’s something wrong with him!” Yes, there is, the person has a mental illness… you would use a term like that for someone obviously racked with cancer would you? No, because it is an insulting and offensive comment, and you don’t treat cancer victims like that.

Let me be clear, I have seen too many people close to me lose the battle with cancer to ever consider trying to belittle it, it is an awful, destructive illness, which all too often proves fatal. I only use it here to try to give an example. There is no offence meant to anyone involved with cancer, and certainly no intention to minimise its destructive power.

My point remains, people treat sufferers of mental health differently. Unless you have been personally involved you may well not understand the nature of depression, may not understand the destructive power it has, not only to the sufferer, but to their carer, and the whole family.

That is why it doesn’t seem incongruous to describe yourself as ‘depressed’ when you really mean ‘disappointed’ or ‘a bit down at the moment’.

What does depression look like, well, it can be different from person to person. In my direct experience depression stops you getting out of bed in the morning, stops you caring about yourself because your self-esteem and self-confidence has gone, you don’t bother to wash, don’t bother to dress, can do nothing for yourself. The cleaning becomes irrelevant, the house gets dirty, you can’t eat or drink, often you think you don’t deserve to because you value yourself so little.

Your relationships suffer because all the domestic work, as well as wage-earning and caring falls on your partner who then has to work virtually around the clock to keep things going. This leads to relationships stretching and potentially breaking, you lose contact with family and friends because the patient cannot go out or socialise, and the carer has no energy or time to do so.

Other people suffering depression display different symptoms. Sometimes the pain of isolation, of despair, of lack of motivation of pointlessness can push you the other way… you make extra effort with appearance, you prepare a perfect smile for the public and say “I’m fine” even though you are hurting so much inside, feeling so desperately alone, isolated, pointless, un-valued, un-wanted.

This situation is what can lead to self-harm or self-motivation. Self-harm is not about attention seeking, it is about the mental pain getting so unbearable that you have to inflict physical pain because you can cope with that, you can get plasters, stitches, painkillers and the rest… you have a pain you can cope with.

So, next time you chip a nail, don’t tell me you are depressed, or I will react…

The trouble is, I understand this, all sufferers understand this but most others don’t, so they see no problem with claiming to be depressed… they then here people who are genuinely suffering from clinical depression putting on a brave face and think their problem is as trivial as a broken nail.

No-one chooses mental illness, and because so many people equate depression with a minor mishap, people do not appreciate how you are suffering, think you are being a drama queen. They even make comments like “pull yourself together” which is one of the most ignorant, heartless and offensive things you can say to someone suffering depression.

So, I am looking now at the celebrity culture, at the shallow majority out there who use inappropriate words to draw attention to their selves. There are other examples, how often do people with a bit of a cold claim to have the flu?

Please, let us try to use language more appropriate to the situation, depression is a serious, debilitating, destructive nightmare of an illness… it is not a weakness, not a chipped nail…

As long as people use the names attributed to mental illnesses to trivial day to day issues, the public at large will never be able to associate them with the destructive illnesses they are, will always believe that the illnesses are minor, and consequently will never be able to understand the how serious they are, never understand the indescribably horrors that sufferers go through, and never understand the massive pressures and stresses that build up on the carers.

If this persists, mental illness will always be a Cinderella illness, never get the support or understanding it needs and things will never improve for the sufferers or their carers.

How and Why I work to support Mental Health

I have several times been asked how I got involved in campaigning for the support of mental health sufferers and their carers, I was even once told my efforts were inspirational. No false modesty here, but there are others in a far worse place than me who do far more. I like to think though that I do my bit.

I first got involved in campaigning because my wife, for who I have been a carer since 2003, has spent the last 2-1/2 years in hospital, still without diagnosis except the confirmation that she cannot now recover and will now have to go to residential care.

Throughout her time in the clutches of the Adult Mental Health Service, 30 months, I have met some wonderful professionals, nurses, OT’s, Doctors… but I have met far too many who are simply not good enough.

For the first 18 months the treatment she, and I as a carer, received was little short of disgraceful. I have raised complaints about it, talked to the Trust received nothing but dishonesty and apathy.

I had been a carer for nearly seven years before I realised I was a carer, and as I learned, I came to understand that many of the problems we had faced should not have been. Had I known then what I know now I could have made things better for everyone.

The problem is, the AMHS treats patients and doesn’t support the carers, who are crucial to the recovery process. The carers are not made aware of how the system works, are never told about their rights and are left in ignorance so that the Trust, it seems, do not have to fulfil their obligations as they are not challenged.

During 2010 I was so frustrated by things, so wound up and tense that I thought I would crack up. I did lots of research and finally found myself supported by Rethink (Mental Health). My carer support worker proved to be an genuine angel, and has given me so much in getting my life back into some form of control. She also gave me contact with a legal advocate (LAMP) who supported me with my complaints, and directed me to an open day with the Care Quality Commission who were researching into the experience people were having in the AMHS.

I went along and also met John, who is chair of Carers Action, local carer support group.

I also started to attend meetings with the LAMP to discuss mental health support issues. At one of these I again met John and was invited to join the Carers’ Action Management Committee . Through my connection with the LAMP  I also attended some meetings with another local group, Genesis, who were running some education programmes with the Acute Psychiatry wards.

Through these groups I was meeting individuals from various other local support groups, as well as the service providers from the County Council and NHS. It was clear that Mental Health issues were getting scant support from the professionals, and I knew I had to do what I could to improve things.

I simply started to attend meetings with the various groups until I decided which ones were most appropriate for me, and am now an established member of the management committee  of Carers Action, and attend Leicestershire LINk mental health group meetings.

Through both of these groups I get invited to consultations and briefings by both the County Council and NHS which serves to increase my knowledge and list of contacts, and I believe, therefore my potential influence.

Whilst getting involved in these various groups and developing my contacts and knowledge I was also pushing ahead with my complaints against the NHS service. This was a very frustrating process as the investigation was poor, was not allowed to investigate staff performance, and abandoned half way through. I had meetings with the Chief Executive, which diverted me to an administrator, who, based on my story, recommended some 14 procedural improvements.

I continued to push for realistic answers to my complaints, and eventually met the Director responsible for Adult Mental Health, he outlined a forthcoming project to be carried out by an external consultancy, April Strategy. I subsequently met with April Strategy who invited me to participate fully in the project.

The project, headed “Improving the Experience” features “In Your Shoes” where mental health service users and carers speak one to one with service providers to outline their experience within the service, whether good or bad.

The professional listener takes notes throughout then everyone joins into work groups to discuss the issues raised. There are some 25 listening events scheduled, and so far they are proving to be very successful. These events also give me an insight into the workings of the Trust as well as other peoples experiences.

I have discovered the merits of twitter and blogging to compliment facebook to spread my message and experience further , and also to hopefully show others that there are people fighting their cause and that there may be some hope at the end of the line.

It is too late now to help me or my wife, the damage is done and you cannot turn the clock back, I can however, do my damnedest to help to influence improvement in every aspect of mental health care. It has become a driving force in my life and I will keep fighting the cause as long as there is need, and I can keep going.

It would be wonderful, to ask every carer and their service user to take up the cause and make their voices heard, but clearly that is not possible, would not be fair to them.

What I propose to do is to continue this fight, to continue to offer support to anyone who needs it, and to help anyone who wants help to get involved.

The inspiration for this has been Rethink Mental Health, and I simply want to put something back to show my undying gratitude for them.

Also I owe it to my wife to continue the fight, to prevent others suffering the abuse and negligence she has suffered at the hands of the trust, and to do all I can to help sort it out