Gary Speed and Depression

Last Sunday I, like so many others heard of the death of Gary Speed, the Manager of the Wales football team. As we listened to the news it became clear that Mr Speed had tragically taken his own life, apparently after a long term struggle against depression.

Obviously I did not know the man, so have no idea how much he suffered, what form his depression took, and whether that was indeed the cause of his actions. As a football follower I knew him as a fine midfielder in his playing days and could not fail to be impressed by what he had already done for the Welsh side. Having heard interviews with him, he also struck me as a very honest man, of man of ability and integrity, and a thoroughly good man.

He seemed to have everything going for him, a success in football management, a popular well liked man with a highly respected and admired career in football.

So, like many others, I posted short tribute to him on Facebook. It seemed appropriate, it is something I normally do when someone I admire, or someone I respect for their achievements dies. In this case, there was the suggestion that depression was the root cause, and I do have an involvement in, and interest in, mental illness.

During the day, several like tributes appeared, but other comments appeared suggesting that many of us spent much emotion and effort paying tributes to a sportsman, whilst ignoring the death of young soldiers paying the ultimate sacrifice in Afghanistan, or any other theatre of war.

Of course there is much to be said for that argument, it is much easier to publicly mourn a celebrity, from whatever field, than someone we have never known, someone we have only heard of because they have had the courage and nobility to devote their life to the service of the crown, defence of the realm and paid the ultimate sacrifice.

I do understand and respect that view, but I have to say this in my defence.

Service people join the armed forces knowing that they will be called to put their training to the test in a theatre of war, they are also clearly aware of the risks involved, that death is possible at any moment of the day or night. I would never have had the courage to do what they do, and respect them immensely. I have known people who were involved in the two World Wars, people who have done tours in Ireland during the troubles, and indeed a guardsman who fell victim to a bomb in Hyde Park.

All of these people deserve our respect, support and encouragement. They don’t select the wars, if you are unhappy with a war, tell your MP, tell the government, don’t turn your back on the young men and women who go to do the fighting, they do not deserve that. The actions of the people of Wootton Bassett have been a credit, It would be wonderful if the whole nation could display the same compassion.

On the other hand, Mr Speed may have suffered an illness which eventually led to his death. All of the tributes I have heard have said that there were no obvious signs of depression, but that is exactly the point I seek to make.

Depression, like all mental illnesses, is a chronic condition that devastates the life of the sufferer and destroys the lives of their carer or carers, yet there is little sympathy, no understanding of the condition.

Depression can present in different ways, for some people the loss of esteem, of confidence, is dominant and they stop looking after themselves, withdraw from themselves and from society. Others are able to hide it from all but their closest confidants, and frequently even from them. They continue to live life relatively normally, whilst suffering unendurable pain and suffering, confusion, and loss of confidence.

For this group, no one knows they are ill, they are expected to live their life as normal, but people do not realise that for them, the act of getting out of bed in the morning can be a major achievement, the very act of putting on the mask to greet people can be almost traumatic, but the sufferer puts themselves through it to hide their problems from the world, maybe trying to hide the problems from even themselves.

The result of this is that they find themselves under even more pressure to maintain the act it becomes harder to admit the problem and harder to seek help.

Sufferers of depression are frequently not diagnosed early enough, if at all, frequently have to cope without support from the health service and the carers have no idea of what support is available to them. The reasons for the lack of support do not come into this text, but it is the lot of countless mental health sufferers.

My hope is that the tragic death of Mr Speed, a ‘name’, a celebrity, will bring depression more into the public consciousness, give it some publicity and hopefully people will start to gain an understanding of the illness. Hopefully it can become less of a taboo subject and start to lose the awful stigma attached to mental illness. I believe that if the illness were more openly discussed, as people like Ruby Wax and Alistair Campbell are starting to do, it will become a less alien subject, people will start to develop an understanding, then an acceptance. That should then lead on to more public support for sufferers and their carers and help them to maintain a more normal life.

So much stigma and even discrimination are the result of fear, fear of the unknown. Not so long ago subjects like homosexuality and AIDS suffered the same stigma and lack of understanding. Both have now lost that stigma to a large extent and are accepted as normal by a large portion of the public. Clearly things will not change overnight, but we need to make a start on talking openly about this subject with a view to reducing the stigma.

I would ask everyone in a position to do so, open the debate on mental health to the public, help to educate people, be prepared to talk about your experiences (that is no simple thing to do) and lets do all we can to remove the stigma and introduce some understanding of mental illness.

Finally, every soldier, sailor, airman lost in war is a tragedy, a tragedy for the deceased, their family and friends, we cannot mourn each one individually, but we, the Nation, come together on Remembrance Day to pay tribute to everyone who has fallen, to show our respect and to mourn. In the case of a celebrity I think it is right to show our sorrow at the loss of those we have admired or even loved from a distance, and when the death is in such terrible circumstances if it can trigger a debate to generate more understanding and consideration of the condition, then maybe, just maybe, the death will not have been in vain

Never underestimate the destructive power of depression

Stigma

So, why is mental illness thought of differently to physical illness. Why do people suffering physical illness get sympathy and support whilst people with Mental Illness are shunned, reviled and considered to be odd or unnatural.

Whether we accept it to be true or not, there is a stigma attached to mental health which does not attach itself to physical illness, though in the recent past illness such as aids certainly had a stigma because of the link with homosexuality, but  even that has now lost its mystique, and lost the stigma to a large extent. The stigma  is felt by the sufferer, the carer and whether consciously or otherwise by the onlooker.

The dictionary definition of stigma is: a mark or token of infamy, disgrace, or reproach.

So why do people continue  to think of mental illness and stigma as partners? Whatever any of us care to think there is still a colossal stigma attached to mental illness and it is a totally unhealthy and unreasonable connection, and is incredibly damaging to both patients and carers.

I have spoken to people in the recent past, and when I have talked about mental health, they have eventually talked about knowing people who have spent time in a psychiatric unit, and were either cured or not. To me it was obvious, but it was many weeks before they admitted the person in the psychiatric unit was themselves. Why was this? I think it is because they felt I would lose respect for them, treat them differently, maybe even cut them… but why would I? They didn’t choose to become mentally ill, nobody does that. Nobody chooses ill health, either physical or mental.

I have a huge respect and admiration for the people doing so much wonderful work in cancer relief, in cardiac repair and huge sympathy for those who suffer, but for me, that sympathy is qualified for people who have contracted a cancer through heavy smoking.

Mental Health is a mystery to all of us still, and only rarely do we get to the bottom of it, find out what caused it. Many cases we can have clues, often circumstantial evidence, but frequently there is no real answer. It has to be said, for some people mental illness is brought on by abuse of narcotics or alcohol, in these cases sympathy is again tempered somewhat, but we should never forget that those addictions are often the result of “a troubled mind”, an addiction, which is in itself an illness.

In order to move on and get Mental Health patients and their carers a proper level of care and support, both in the community and on hospital wards, we have to lose the stigma that unfortunately attaches to mental illness. Only then will people be able to talk about it in an open and honest way, which should lead to understanding followed by ultimately by acceptance. It is the fear of other people’s reactions that stops us from talking openly, as we can about other illnesses.

Those of us involved with mental illness need to start the change, we need to be able to ‘bite the bullet’ and answer people simply and honestly about the illness, its impact on patient, carer and the extended family. Clearly we have to avoid alienating people by talking mental health at them all the time, but I am sure most people would accept honest answers to enquiries, and they may even show some understanding, after all some 25% of the population suffers from mental health problems at some time in their life, by talking about the issues we may lessen the fear for others, we may even liberate them to admit to their own problems. I know from harsh experience that bottling it up, not admitting to the world at large, even worse not admitting to yourself, can eventually do irreparable damage.

Not so long ago, AIDS and Sexuality were virtually taboo subjects, with major stigma attached. Over the years the fact that many celebrities have openly admitted to being gay, and some have even died of AIDS, all of which has brought the subject out into the mainstream, got people talking, and although they may not accept the conditions, at least they are now talked about openly, and the stigma is dramatically reduced.

Could this happen with the stigma surrounding mental health? At present I don’t think so. Although people as diverse as Ruby Wax, Stephen Fry and Alistair Campbell speak openly, with compassion and knowledge about the condition, they remain in the minority. Sadly there are too many celebrities to whom chipped nail varnish is depression, and chipped varnish being restored is bipolar. This simply undervalues the illnesses in the public eye, the public start to think of these conditions as fraudulent, as laughing matters, and the subject gets once again becomes trivialised and people think that depression, bi-polar, schizophrenia and the rest are trivial conditions.

The real nature of mental illness is devastating. The impact is dramatic, on the sufferer, the carer and their family and friends. Mental Illness destroys lives, even though 25% of us will suffer with mental illness, the stigma and lack of understanding, which I believe are mutually dependent, prevent the world at large from understanding, dealing with, or even caring about mental illness.

So, how do we go about changing the situation, about bringing this awful subject into the open and getting its victims the support, respect and understanding that they so need .  One thing is certain, it will not be easy.

The first steps are for carers to become empowered, to accept all the support that is available through the various voluntary support groups. This will lead to knowledge and understanding which will help them to understand what is happening in their lives.

 Carers and the Service Providers must realise that they have the same aims in mind, which is the support of the patient, and understand what each other needs. As a carer it is easy for me to say that Service Providers need to listen to and understand me, but like many carers, can I say that I always listen to and understand the needs of the Service Provider?

To treat a mental health patient effectively it is important to take a holistic view, for the medical team to work with the carers and to treat the patient but to also include the family for information and guidance to support and inform their clinical work. This will also ensure that the carers remain a part of the care process, ease their own stresses by being involved in the process of care.

This will have the effect of normalising the illness, by everyone involved, whatever their involvement, treating each other with respect and dignity, more like the way physical illness is dealt with.

Once we have a situation where it is the normal practice for the patient, medical team and family to

working together, much of the mystique will be shed, and the family will have a greater knowledge and experience, which will then allow them to talk with confidence and knowledge.

Opening the dialogue is often the hardest part, so when the family discusses the illness wit others, they can speak in a more natural and matter of fact way, hopefully removing the mystery from the illness and starting to normalise it.

Ultimately, it would be wonderful to see the major media featuring items about mental illness and caring as they do about so many other dreadful conditions. This would obviously expose more people to the realities of the illness, and help to develop the knowledge and understanding so essential to start to minimise then remove the stigma

Improving the Experience for Mental Health Patient and Carer

My experiences over the last few years have led me to say and write much in criticism of the Adult Mental Health Service in Leicester (LPT), and to be fair, I stand fully behind every word, every criticism, each one is true and valid, and well deserved. However, I hope I can express the same enthusiasm when writing something good about them.

Like all organisations the LPT seeks to publicise its successes, but as for every other organisation the press are happy to pick up the problems, and write emotive pieces using dramatic words and phrases, and confine the good news to a small paragraph in a corner of an unread page. This of course gives the public an impression of the service, which the staff also read, and it saps their morale and spirit, leading to lower performance and perpetuating the problems.

Is it fair that the press work like this? On the face of it no, because it is unbalanced reporting, but think again… the good stories are basically highlighting when they have done their job properly, when the staff have done what they are paid for. The criticism refers to serious lapses where lives have been potentially put at risk, and in some tragic cases, actually lost. They are by far the minority. So, the press report on the failings, skirt over the successes, but there is never a mention of the countless smaller errors which are not life threatening but add up to people losing any trust or confidence in the LPT.

When they get things wrong, the best approach is to say “yes – we got it wrong and we are doing the following to ensure it cannot happen again”, but my feeling is that they are reluctant to do that.

Now, over the last couple of years I have raised countless complaints, attended many meetings, received no answers from anyone and things have not changed. I have now been invited to attend a superb initiative aimed at ensuring that the LPT understand why patients and carers have the feelings they do for the service, warts and all.

This is a superb initiative to get all of the Trust staff, from all Senior Management levels, the people doing the real work on the wards, and all of the outpatient services to listen to carers and service users, to really listen and to understand the good points, understand why the criticisms are made and importantly understand how they impact on the lives of the people involved.

I have today attended a meeting at George Hine House involving a carer, a service user and senior officers of all areas of the Trust as well as the consultants facilitating the programme. I was delighted at the warmth with which the programme is being embraced by the LPT and the enthusiasm in the room to get things started and start learning so that lessons can be learned and changes made. It was so positive!!

The plan is to finalise the schedules and produce some advertising artwork to be distributed via existing networks as well as being displayed in appropriate locations advertising the process and inviting carers and service users to become involved. This will all happen before Christmas, and the meetings, where carers and patients actually get to talk to the service providers are being scheduled for January.

The initial process will involve all of the services within the community, to be followed quickly by the second process,  covering the work of the wards

I have seen the results achieved by this process in the Childrens Mental Health Service, and have seen testimonies form other Trusts who have been through the process already. Each one has taken the lessons on board and shown significant improvements.

I would recommend to anyone who has a chance to try to get involved, the conversations with the service providers will always keep you away from people you have, or are currently, worked with, and there is no way that your comments can be used by anyone to negatively impact on the treatment of either you or your carer.

Every precaution will be taken at all times to ensure that you are comfortable and feel free to talk honestly without interruption or comment, and it is your chance to let the Trust know of your concerns and indeed the things you liked in your experience.

What has happened in the past cannot be undone in anyway, however much I complain and rant, what happened happened and cannot be changed, I have always said I am raising, and sticking to, my issues purely to help bring about improvement for Mental Health patients and their carers.

This process is a huge investment of time, energy and money by the Trust, and as long as we, the Patients and Carers, can talk to them openly and honestly they will listen, and will bring about the improvements we have been craving for so long.

The LPT is being very proactive and open in taking part in this process, as long as we, the public involved, accept their invitation and speak frankly we will see the improvements we seek.

The LPT is to be praised for this initiative, and I personally take my hat off to them for giving me the chance to be involved

Ongoing Carer Support

In the current world financial climate, we all know that we all have to tighten our belts, whether we are an individual, company or government. Inevitably this will mean hardship and struggle for many, but this is not a time for political comment or recrimination, it is a time to make sure that cuts are made in a fair and reasonable way, minimising the harm as far as possible, in particular minimising the pain for those who are least able to cope or fight back.

A prime example is our National Health Service. People who need medical support need it because they are unwell, potentially could die if not treated properly in time. Perhaps in order to save the NHS some of the huge amount of money it spends every year we need to look at increasing efficiency within the service, minimising waste, and reducing the amount of cosmetic work done. Also more emphasis on checks and prevention could stop many people becoming seriously ill and needing ever increasing amounts of expensive treatment to help them.

One of the major savings currently available to the NHS is the countless thousands of unpaid, unsung carers, who suffer untold hardships to look after their loved ones, when they are hardly trained to do so, and really need medical support to help them. It is estimated that carers alone save the NHS some £100 billion per annum. Without them the NHS would surely collapse.

The pressure on carers is immense, many are emotionally and physically exhausted, and have a greatly reduced quality of life, in some cases, maybe as dramatically reduced as their loved one for whom they are caring. Many carers indeed become service users as a result of their caring, which is an additional drain on the NHS resources.

It is imperative that the Councils, both City and County, as well as the NHS understand the level of support they receive from carers, both in physical and financial terms, and treat them with proper respect and support them in their efforts to both care for their loved ones and help the service.

At present there are a number of commissioned groups in the City and County who are there to look after the interests of Carers and Service Users, and all on a voluntary basis. Each group has its own specialities, and acts both to support the carers and service users as well as lobbying the Councils and NHS seeking clarity, improvement and mutual support.

In the latest attempt at rationalisation the Councils are now planning to decommission all of the groups except for one, who will look after everyone, service users and carers alike. This will of course make financial sense and make liaison easier, working with just one group, but I fear it will seriously dilute the support service users and carers currently receive, making a difficult and stressful situation far worse, and potentially pushing more carers over into becoming service users themselves, which in the long term will be far more costly.

Above and beyond that, the differentiation between Physical and Mental Illness will be lost. If you are not a carer, or service user, this may not sound too serious, but the difference between caring for a loved one with mental illness is dramatically different to caring for a loved one with physical disabilities. I cannot say one is harder or more stressful than the other, but they are significantly different. The demands are different and the nature of the illnesses are different.

This means that a form which is designed to assess the needs of a carer for a person with mental illness will not cover all the needs of a carer for someone with a physical illness. To be fair, the County Council have agreed to add an appendix to their basic assessment form to cover some of the different requirements of the carer for a mentally ill person, but it is my belief that physical ands mental illnesses should be kept totally separate as they are so different in nature, have such different demands. It is unfair on the assessors, as well as the carers and service users, to try to cover everything under one form, one process.

My fear is that the proposals from County Hall will take away the specialist knowledge of those involved in Mental Health care and Physical Health care and reduce the whole thing to a paper exercise, ticking boxes without proper understanding or concern for the issues involved. This will inevitably lead to wrong conclusions and reduce the level of support to carers even further by simply not acknowledging or understanding the issues and needs of the people who need the support.

I find this a totally unacceptable situation and would very much like to see County Hall be totally transparent in its aims in this respect, and for them to listen, really listen, to the people so deeply involved, and to abandon this plan which will, I am sure, only lead to more problems, more hospital admissions due to exhaustion, nervous collapse and indeed heart attacks which will ultimately cost far more than supporting and working with the different groups as at present