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Before I even get started I want to make something perfectly clear.. I am NOT having a dig at the NHS. I know plenty of people out there have their issues with the service, some quite rightly so, others just over expectational of what the service exist for, and what medical science is actually capable of.
Contrary to believe, not all lives can be saved, no all conditions resolved. Of course it is sad to lose a loved one, but blaming a service as mighty as the NHS is not always the right way to vent that feeling.
Mistakes have been made, lives lost for sure, and no that is not right. But on the grand scale, if we frown on the bad, then we should also celebrate the huge achievements of the NHS every day. But as usual, we are quick to complain, but slow to commend.

Right, now to what  I started writing this whole entry about. Not sure about its direction just yet, so lets see how it pans out. In short, I want to address the mental health service offered by the NHS. Obviously this is something I am quite familiar with, having been treated for depression and anxiety a number of times now, so I am not just grasping at straws here, and want to use some of my own experiences, and stories of others I know to try and put across a balanced opinion, so lets try this.

The first time I  suffered from a bout of depression was long before I was ever treated for depression. In the late 90's, losing touch with my daughter drove my to the brink. And thinking back about that now, reminds me very much of my most recent experience. Both dealt with by me with irrational amounts of physical activity, training twice a day 6 days a week at the gym. Good for the body, terrible for the mind.

Back then I was a lost soul, still in my 20's seeing my daughter torn away from me, and worst still, seeing my child move forwards in her life without her father, just like I had. Something I had vowed no child of mine would EVER go through. And there is was. One afternoon I found myself in casualty with a large gash on my hand, as a result of punching through a laminated screen in frustration. A scar I still carry today, and a reminder that physical reactions to feeling unstable mentally need to be limited and controlled. I didn't intend harm to myself, but ended up doing so. I never recognised what I was going through as being a mental health issue, so plugged on for the next year, finally slowly returning to my old self.

It would be another 10 years before I would see depression again, properly at least. As the condition of my mother worsened, and her need for a carer grew, I took on a new lifestyle. Combined with the recovery of a recent operation and a bad time at work, my mental condition dropped, and I soon realised I was in a very dark and desperate place, struggling to sleep, socialise, or even care about my own well being. On seeing a doctor I was prescribed Citalopram 20mh, soon rising to 40mg. Thankfully work provided some one to one counselling for me, and with the help of Peter my brilliant counsellor, I made a strong recovery, again, after about a year or so. Meds were reduced and phased out.

Move on another 5 years or so, and there we were again. A huge slump in mood drove me to possibly the deepest and most desperate point I have ever been in, long term. I have had huge lows, but never stayed this low. Seeing a new GP, I was back on Citalopram, and referred for counselling. This is where it really begun.

I was phone assessed by what felt like a very robotic and uncaring person, who decided my condition was mild and I should go to Cognitive Behavioural Therapy (CBT) For those not familiar with it, the only way I can summarise it is like this. You are taught to  identify points from early life which may have shaped your behaviour today, then to concentrate on what triggers your depression, and the cycles you go through which perpetuate the depression. Learning coping mechanisms, how to isolate each component, and on ways to avoid the spiral of depression. It sounds a bit hopeless and complex, but I must confess by the end I was understanding myself a lot better. In short, CBT isn't as bad as I first thought it was, but still don't believe it is for everyone.

As I was first introduced to the CBT service, I started to understand why some people were so frustrated with the NHS for their MH provisions, or at least the way they manage it. A few weeks after my somewhat uncaring phone assessment I received a letter to go to the Jenner Health centre for a one to one, with some vague information about this CBT thing. Having looked it up on the internet I was curious but not convinced.
On my arrival there I realised that not only was there no reception for the CBT dept (as noted in the letter) but there was barely a sign that I was even in the right place. Bad start for anxious people. My appointment was for about 12.00, but by about 12.30 I hadn't seen a single person on the floor or in the waiting room. Finally someone did come in, and was swiftly collected by a post natal class person. Now I am wondering if I am in the right place, anxiety levels rising.  Eventually someone came out to get me, apologising as we walked down the hallway. Little comfort for the way I was now feeling.

I was briefly asked about what brought me there that day, then pummelled with piles of papers about CBT. Being told that the things I was talking about were not of consequence, and that CBT only looks forwards. The past can't be changed. Tell that to someone traumatised by their past!
The following week, after finding peace with myself and realising this was the help I was getting and to go with it, I arrived at my appointment to be told I had been referred elsewhere, and was now to join a group therapy class. Anxious and depressed, great, lets go sit in a circle and talk about it. I was told this was NOT the case, but on arrival it was just like that. A circle of chairs and two counsellors.

At this point I was feeling hopeless. Speaking to the counsellors about how I felt, I was told nicely just to stick with it, but with no real foundation to it.

So I guess this is where my concerns first start. As humans we are capable of compassion and empathy, to a degree at least. But the line "I know how you feel" is used all too freely. If you have never been bound by the ropes of depression, or had your thoughts suppressed by the worry and voices in your head. If you have never just wanted to spend the next week in bed, and not wanted to see ANYONE face to face for weeks on end.... Then you certainly should not tell a depressed person "I know how you feel", you really don't.

I applaud anyone choosing a career in mental health. As far as the NHS goes it is hardly financially rewarding, and to some degree it isn't an easy role to fill either. It takes a strong mind to deal with such matters day in, day out. However I do sometimes wonder what the criteria really is for getting such a role, and how many sufferers of depression actually work in the service. Maybe it is counter productive to have sufferers working in the field, but from my perspective, I am in my element working with people suffering, as I feel I have more ability to understand what they mean when thy express how helpless they feel. Rather than replying with the "hmmm, hmmm, yes" I seemed to get a lot of the time.

So before I go on anymore, thank you to anyone who seriously takes on a role to help sufferers of mental health issues, not just depression and anxiety. You DO make a difference for sure. But I wonder would more funding, training, or better selection of staff, and a better understanding of the conditions make a bigger difference.

Do I think I could do better? Well that is a very good question indeed, and a fair one. I don't have any qualifications in anything, let alone psychology, I have no further education either. So academically I am useless. But is that what counts? Who can lead you through a forest at night the best, an expert map reader who has never been to this forest, or a local who lives there, but can't read or write? I think the answer is obvious. Sometimes qualifications and certificates are not the be all and end all. Sometimes its more about understanding and empathy to the situation.

Obviously there is some information required. Not every experience is the same, and not all people react the same way. Understanding the mechanism of the mind is pretty darn important too of course. So there is a balance to be found for sure. The right level of input from sufferers, the correct level of understanding of the situation from a psychological perspective, and carefully planned academic coursework and structured action plans. Question is, is this being achieved?

From my experience, possibly, in fact probably not. Counsellors arriving late to groups, not understanding the impact that has on the recovering mind. Mixed up piles of photocopied coursework sheets, sometimes not enough to go around. Depending too much on patient participation to get the course moving. Without solid contribution of stories from those attending, sessions sometimes stalled. In my instance I was happy to share deep and past experiences, but it was quite clear to me that many others were less comfortable (rightly so). Counsellors unable to directly answer questions on the subject matter at times, with others in the group having to fumble for answers til it was decided one of them was right.

It is not all negative of course, I came out the other end feeling better for it. My question is, who did what for me. Did I get back on my feet myself, did my sharing and helping others inspire me to fight back, or did CBT save the day? Honestly, I think it is a combination, but not a very balanced one. CBT put me in a room with people, something I was uncomfortable with, but willing to try. It also gave me the opportunity to tell my story. However the coursework was mainly thinks I have been through on my own free will. Identifying triggers, identifying drops in mood, coping mechanisms, understanding how society makes me feel.  So the actual learning side was lost on me.

That said, helping others in the group identify with their own demons, and give my own examples to help them better understand their own, that was something. By half way through I was looking forwards to each week, to see what impact I could have, and getting people smiling or sharing was a powerful drug for me.
This in turn enabled me to help myself. Both understand myself a bit more, give me a purpose and some self worth back. All in all the right combination was found, for me at least.

As the course went on, and people showed up from time to time, it became obvious that some people were back for the second or third time. That part was lost on me. Learning about yourself, understanding the functions of the mind, and the cruel tricks it plays is one thing. But re-learning over and over.... I don't get it. If you need help after completing the first course, surely you need a different approach. In this respect the MH system is a bit lost and misguided. I wonder what it feels like to be re-sent on a 12 week course just because you have become depressed again. While the lessons learned are powerful and enlightening, they simply cannot stop the body and mind from throwing your life into turmoil, it's just not that simple.

Now the elephant in the room. Medication!
Having grown up watching programs with mental health patience receiving mind numbing sedation drugs to keep their minds rested, I have long thought that all anti depressants are of the same nature, making you sleepy and non functional, and silencing the issues, rather than helping tackle them.
However it turns out they are not. They all do different things, some indeed are sedative style, but others help the body produce more of what is needed to balance your moods. Apart from some strange side effects during early days, life after that, once on the right dose becomes pretty darn normal. Apart from remembering to take a tablet each day, you are just you again, certainly with Citalopram.

I know quite a few others who feel exactly the same way about the meds.
Being serious for a second, look at it this way. In most cases you can come off them when the depression and risk of it reoccurring has passed, reducing the dose, until none is needed. I have done that successfully myself after my last bout of depression 5 years ago.
Think of it this way, if you have something important to do which requires your full attention, and have a headache, you grab some ibuprofen, wait 45 mins, and you are fit to do the task at hand. There is no stigma attached to ibuprofen, so it is socially acceptable. With mental health, it is the same, but sadly its going to be 45 days or more rather than minutes. Once the levels in your body start to level out, and you are able to think straight again, you can help yourself understand what the issue is, and how best to overcome it. Sometimes without clearing the fog, you won't be able to see the path out of the forest.

So I don't see them as a negative thing at all. And I really wish society would see this too. Alcohol alters the mind, so does tobacco, but somehow they are both social and acceptable drugs to use. "Overdosing" on them is common place, and abuse of them is an epidemic. But society seems to say that is ok. And yet at the same time frowns on simple, controlled, monitored medication taken by those needing that little tweak of the mind. I don't get it, not for one second. But then I don't drink or smoke, so how would I. Just as those who frown on medication for mental health don't get it, but still judge.

The drug side of the mental health treatment on the NHS seems to be aplenty. Churning out prescriptions many times a day, no scheduled reviews once prescribed. The face to face part, which in some cases is critical however seems very hit and miss. I felt that the whole process took far too long for me to get facetime with anyone. However it seems that this waiting time varies radically from borough to borough, just in London alone, so nationally, I dread to think what the variations are.
One example. I was referred in November 2015, and finally got face time in Jan 2016. To me, that was an eternity, and waiting for it was both scary and painful. Thankfully by that time I had started to find my own circle of support from a great group of friends.

For someone else I have gotten to know, they were referred at the same time as me, and here we are in August, coming on for a year later, and they are STILL waiting. Same are, different borough council, so different MH team and ethics it would seem. This is fundamentally where it all starts to fall apart.
I have all too often heard the term "NHS postcode lottery" and again wondered what the hell people are on about. But it would seem this is one example of this phenomena.

I just don't get how there can be differences in urgency, treatment, assessment, and over all ethics towards mental health from postcode to postcode. Surely the NHS as a whole, all the trusts combined have agreed a strategy for treating mental health. Moral codes of conduct, tiers of urgency and treatment nationwide. I don't understand how one body, overseen by one government, can be so fragmented, first into trusts, then into boroughs, and each fragment having its own ideals on treatment for a condition.
It also leaves me wondering if the same is true for others branches of the NHS, other fields of medicine. Should I move house to get considered more important by another boroughs health team?

Thankfully for me, in South London, under Lewisham, I cannot complain about any of the medical attention I have received over the years. Ultimately it has all worked out for me, and I am here writing annoyingly long blogs like this. But I has me now wondering about how different things are, and what can be done to make a change to the whole system.
I have read news reports for years which say the mental health section of the NHS is desperately under-funded, and spiralling out of control. I have also read reports of how people have been let down by the service, resulting in vulnerable people committing suicide, or harming others.

Somewhere in amongst that all is the answer. The right direction to take.
So my questions.

Why are counsellors photocopying literature for a course with a fixed program of learning. Buying paper,making thousands of copies on a photocopier, making a mess of things, and fumbling by. Is it not easier to have these put into booklets and handed out by every borough, every trust. Ensuring that everyone is receiving the same education on their condition. No missing pages, no topics accidentally overlooked. Surely it is cheaper to put it out to tender once, and print them all and distribute throughout the UK. Procurement for such things should be centralised. One of the faults maybe of the NHS being so top heavy and fragmented?

How many people working in the field actually have first hand experience of depression and anxiety. Statistically it is likely that most people working with cancer in the NHS no someone who has experienced cancer, so empathy is far easier to give.
However while depression and anxiety is at epidemic levels now, firstly it is in the shadows. Not discussed, never admitted, and sometimes denied by those diagnosed. So getting people to speak about it, let alone help in the field is really tough, I get that. But I am still curious to know how many are in the field, helping others understand. After my CBT course was done, I was hungry to help others, and as it turns out when I look back over my life, I have been doing this for ages.
I was shocked by the number of my friends who have suffered or still do, and touched by the positivity I received about my honest and open blog entries about the matter. I really didn't realise how wide spread it was, nor how secret it was.

I really wish I had the know how to start digging for information and understanding how things could be done differently, not only from my experiences, but from others too. If I had the time, I would dig deeper, and push harder to get heard, but for now I will carry on doing what I feel is right, and keep reaching out to others who are fighting their demons. Struggling every day against the voices in their heads, and the lack of understanding from the world around them.

I have more to say on this matter, watch this space. But in the meantime, if there is any official organisation I can lend my mind to, just call 🙂

While taking a moment to reflect recently, and talking to someone about day to day life, I realised something shocking.
I am without realising it, cutting away at life lines, and pushing people away, when in fact I actually need them close by.
Last week I had an amazing time in a friends company, we chatted, laughed and messed about in a way that truly felt unfamiliar to me at the time. Yet the more I think about it, the more I realise that was actually the real me, the normal me. Not the current me that is beaten down by emotions, and weighed down by events of day to day life.

But over the past days, as I have settled back into my normal role, I seem to have been a bit negative to said people, and really should think before I act.

Now I'm not trying to get all deep and emotional, I'm not going to run away and start a new life as a hermit living under a waterfall or anything. BUT... I am going to make a concious effort to make sure I treat the people who make a difference to me, with respect, and hope I can keep their company for a long time.

So thank you for listening to me, for entertaining my thoughts, and for all the kinds of company you offer. There are some special people out there, for which I am grateful.

A line of arrogance from me for a moment. Usually being the one offering the hand of help, I now know what it feels like to receive care, comfort and ne respected by someone who owes you none of that.

X
Regards
Michael

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Ok so today is "I give up" day, mum not me.
Since the other day with the change of colour of one of her meds she has become more and more determined to do things her way. Refusing to take the yellow pill now, so I have changed it with the few remaining ones of the other colour until I can see the GP about it, and now eating less and less.

Needless to say it is frustrating as hell to sit back and watch someone slowly starve themselves, as well as have such a low intake of fluids.

To me, another stay in hospital is on the cards, but if course she can refuse that too.

She said in short to my sister today that she is fed up of it all now and just wants to give up. Which is fine if that's what she really wants. But there is a right and wrong way to do it, and right now, it's the wrong way of doing it.

On top of all this, her interest towards her sleeping tablets is a worry too. Complaining that I won't let her keep the entire pack of 28 in her room. My reasoning to her for this is the kids. All she has to do is drop one, or the pack, and one of the little ones could be enticed by their pretty blue colour and down some.
Obviously I have a dual agenda, and my other concern is, with no one about, on a bad night she could decide to take more than she should. For obvious reasons I want to minimise this risk.

One way or the other I am going to have to speak to the GP and the hospice in the morning and try and get some advice and some hands on help with all this, as it is rapidly becoming more than I can deal with.

I can't imagine how it feels to be going down hill, knowing you are terminally ill, and at any time there may be a droip off point. But at the same time I can't imagine not trying everything possible to stay on to of my game too. Maybe its because I am not in that position, maybe we have different mindsets or something, but I can't figure it out.

There have been numerous "false alarms" along the way with her getting ill over something totally unrelated, and we go to the hospital, she stays in, gets hydrated and comes home much better. But this time the train of thought is on another route. Fighting help, refusing to discuss, and turning away almost anything offered to make life a little easier.

Needless to say, that just makes my life harder. I know, I know, poor me, but I'm not the one dying right. Nope, you are of course right. Instead I'm the one feeling shitty about being off work for so long, wondering what is being said about me, on medication so I can think straight and life a "normal" life, and be there for my mum while she wastes away right under my nose. What would I know, right!

Ok rant over. Here's to hoping that I can get some help from the GP and hospice with this tomorrow.
Tomorrow, my 38th birthday, and 3 years to the day that I ran around like a crazy man trying to get a doctor to see my mum who had just admitted to me she thought she had breast cancer.

Birthdays are great eh!

Tense times ahead I fear, but time will tell.

Regards
Michael

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Well I'm hoping its just a bump along the way, but not too sure. But mum is now back to not wanting to eat or drink much. Becoming tired and weaker by the day, and relying much more on the wheelchair to get about.

The steroids are being reduced, and since dipping from 2mg twice a day she has slowed down. Even on 2mg once a day she was still eating and quite active. But now on 0.5mg a day she is actually using the walker around the house rather than carrying it, prefers to be IN the wheelchair when out and about, and is really off her food and drink. Its a chore to eat. My worry, dehydration.

Yesterday we went to St Thomas's hospital to get mums "surgical appliance" also known as a wig, which she seemed very happy with. However today while getting ready for St Christophers she said she would not be wearing it as it was a bad fit and looked silly, and quite frankly could not be bothered to put it on.
She added on the that she was "very very sick".

A little while later we toddled off to the hospice for a meeting with Karen the nurse. Enquiring into mums health was like asking a 2 year old where the put the car keys. Not really willing to discuss it much. Changing the subject whenever possible. All the symptoms were to be blamed on any medication that she could remember she was taking, and promises were made that she really has no interesting on following through with. Using a nasal spray, trying to drink more, and seeing the GP later. However she WILL be seeing the GP, I will make sure of that.

A number of things could be contributing to this "bump" in the road but without tests and trying meds we will never find out.

We are returning to the same familiar "no I'm not doing that" attitude, which usually results in an ambulance and a week in hospital. Sadly it seems we have again passed the point of reasoning, and she just thinks doing nothing about it, and sleeping more will solve the problem. So fingers crossed the GP can put her on the right track, although at this rate a referral to the hospital.

So, back from the hospice now, lunch made for mum, just waiting on the carer. This afternoon, dog walks then off to the GP @ 3.30 to get mum seen.

Here we go again?
Regards
Michael

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Oooooooooooook this is how it goes.

Finally got her to the hospital, parked as close to the dept as possible for her, only to find they have moved it lol. Sister helped her there while I got parked properly and not pay extortionate rates for parking.
Lovely new department, in the new wing, so no more dark broom closet anymore.

Running a bit behind, but got seen within an hour of the original appointment time. Me and my sister waited while she saw the doctor, then when she came out, I popped in. I was welcomed by the doctor and specialist nurse who sat me down and filled me in on the whole matter. Mum had apparently said no to me sitting in previously.
Suprisingly on the journey home she was 100% straight about almost everything said, which was pleasent.

So, the prognosis, outcome, road ahead.
The right side has become very large now, and radiotherapy is not considered a viable option. Chemo "may" have a partial effect, but the preferred treatment is now surgery only. HOWEVER, her COPD is in the way of that, with her breathing being considered borderline too bad for general anaesthetic, so she has to have a complete medical inc scans, xrays etc to see if she is fit enough to even be considered for surgery... not that she has accepted having surgery, but they are thinking ahead.

Unfortunatly, due to the size of the lump now, it would be a more intrusive surgery, with the breast being removed, and her requiring a skin graft to cover it up and help it heal. Given that she was against a simple lump being taken out, I cant see her going for this at all. Myself, the doctor and the nurse are all in agreement that she has made a very rational decision to let the cancer take its course, and to see it to the end with no further treatment. So I am grateful to the doctor for continuing to pursue the surgery route even though its an outside chance.

The COPD is what is causing all her main symptoms at the moment, for which she needs to go back to the GP, so I am in the middle of trying to get that sorted out for her too. Once again, unfortunatly she is unlikely to take on board much of what they say or give her, so the condition will get worse. Amazingly with full blown cancer, its the COPD making life awkward for her now. So hopefully we can get some help for her there, and make life a little better for her, a little mobility and freedom. But the harsh reality is, she is going to need to be watched much closer again now, with the risk of her passing out again.

So the road I forsee is as follows.
Refusal of any other treatments, and letting the cancer take its course.
Supervision from the hospital, and pain meds given to make things comfortable.
Reluctance to get anything done about the COPD
Breathing getting worse and worse.

Hopefully she is "friends" with the doctor again now, and will continue to go there and get help from them, inc pain relief.

Next appointment has been set for within a couple of weeks time, to go to Guys to see the specialist there. Updates to follow.

2

OK so im sure we are all familiar with opening a packet of medication, be it asprin or prescription. Which ever end you open it from, the clever little leaflet inside somehow manages to be at the end you open it from, blocking your route from your awaiting pain relief, high, or treatment for that "itch"

So what do you do? Grab it, pull it out of the way, and munch your pills. (90% of the population will NEVER read one of these leaflets). But you are missing out, missing out on worry, wonder and concern about what those pills might just do to you. Have a quick scan over it and you will see words like "sores", "rashes", "tiredness" and so on spread throughout the page.

Side effects is what I am on about, if you had not already gathered. The expression "suck 'em and see" is quite apt when it comes to the average persons approach to medication. You are ill, you need help, the doctor says try these, so you give it a go. Personally I am one to give it a go, and see how things work out. Sadly my mother, due to her recent ill health and massive increase in drug intake has taken to reading EVERYTHING... The box, the leaflet and anything else she can get her hands on.

She has COPD, which for those not in the know is Chronic Obstructive Pulmonary Disease, aka she cant breathe very well. This is actually an umbrella condition which covers a wide range of conditions causing respitory issues. However this mixed with an obsession of reading and worrying about side effects of meds is a leathal cocktail.

As with most medications, over the counter and prescription, a lot of hers highlight they can cause respitory issues, which of course is not helpful with COPD. The focus needs to be on "could" though, and not the WILL that she insists it means. Therefore ANY drug she is prescribed for anything that mentions breathing, is binned!

Currently as of today, she has decided that due to a bad night breathing last night, all 4 drugs she was recently prescribed are no good, and she will not be taking them any longer. Ignoring the fact that its taken 5 days of taking them to decide this. So due to this now, she will no longer be treating other conditions she has, and her health will again deteriorate.

As someone who has spent a good few years popping pills for all sorts of ailements, I can confirm that modern medicine is a bloody amazing thing, and deserves praise, not doubt. So it is very frustrating for me to see her shun all the help that is on offer, due to a simple obsession with POSSIBLE side effects. Will she return to the doctor and tell him the problems she has found.... Of course not, she will just plod on and get iller again.

Its a vicious circle, that is getting ever tighter.