The Cold Shoulder….

Doing what I do trying my best to improve services is bloody tough, especially when managing own health.

Had another CT scan on Sunday and am nervously awaiting results but that is just another thing on top of the norm. I’m always fearing the big lows I get where I shutdown and turn off my phone and digital life. Not sure it’s the scan or just another inevitable low that always comes, even when life is going well.

What I found this time was when I finally got my phone on to check all the emails, I find the two most important ones I’d sent in desperation were unanswered…..

Probably hardest thing doing the work I do is when the barriers go up and you’re treated as the outsider, the one that’s not salaried and therefore is not seen as an equal or even a human being at times.

I know when things get tough, people don’t know what to say or might feel awkward but it’s the worst feeling to be excommunicated or persona non grata.

Please understand how hurtful it is, especially when you’re already hyper-vigilant to rejection and experienced it many times in the past.

Alot of co-production issues stem from lack of communication or understanding and therefore the worst thing you can do is stop doing either or both.

Hoping I pick up and must decide a way forward that avoids me feeling this rubbish

The Partnership Forum – A Vision!!!

So back in 2016 my local trust Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) started to revisit its Involvement Strategy (now called the draft “Partnership Strategy”) and as part of that we decided to go to the people and held severn listening events countywide, rather than just focusing on Cambridge or Peterborough alone.

The main thing people wanted was a forum or a more formal board they could join to influence the decisions made within CPFT.

They also wanted more involvement opportunities that went beyond ward inspections, filling in forms or other things the trust suddenly decided they needed a service user for. That often felt one sided rather than user led or proactive involvement as equal partners.

The other key message was how pleased everyone was with the trust going to them and how the events were organised and delivered locally with service users facilitating the events in collaboration with staff.

In January 2017 myself and other service users really pressed management to act on this information and it was decided we’d form the Partnership Strategy Group (PSG) that would “put meat on the bones” of the draft Partnership Strategy and “bring to fruition the aspirations within” giving the strategy a beating heart and not just a document of well meaning words, collecting dust on a shelf a year later.

We did however decide that rather than update and publish the draft Partnership Strategy ourselves, it would be much better to focus on forming a diverse forum first and have them finalise the draft Partnership Strategy with the intention of presenting both at the same launch event in the future. That way we launch the trusts newly completed Partnership Strategy along with the actual Forum showing we are already bringing to fruition the ideas within. However this is all to be decided by the Forum and we hope to have agreed upon the name as these are just recommendations from the PSG.

So we met with senior management and asked the SUN Network to come along as support and play the role of co-production arbitrator if necessary. We also felt it was important to collaborate with the SUN Network as we are all service users or people with lived experience.

We all decided that the PSG (like the proposed forum) should have third sector organisations on it and those organisations could invite interested service users also, which they did.

CPSL Mind and Lifecraft, along with SUN Network joined the PSG the day it was formed. As we move into the operational stage of the Forum we aim to ensure physical health organisations are included. However we have had leaders of each trust directorate which includes physical health, now the trust has integrated them into CPFT services.

Having such a diverse mix was great and we focused on what the people wanted and put together solutions or ideas on how we could achieve these aspirations.

The main one of those ideas we came up with was the “Partnership Forum” which would have a mix of service users, governors, staff and third sector organisations all meet every month to share what we are all working on and ensure our efforts are more coordinated, whilst working in collaboration and with transparency. This also reflects the main purpose of the Forum and avoids giving people labels such as “Service User” or “Patient” that can be contentious.

In 2016 we found pockets of great practice in the trust but no overall coordination so the Partnership Forum is all about joining this up and ensuring much more partnership working begins to spread throughout the trust and more people like myself are invested in and embraced as equal partners and leaders in their own right, rather than just passive recipients of involvement.

By having service users working within the governance structure as equal partners then we can ensure our voice and influence is embedded throughout the trust. By doing this we ensure the trust gets things right first time and services really do meet the needs of those using them. This also saves CPFT unnecessary costs they would’ve incurred otherwise and shows the organisational will to involve the public and demonstrate transparency throughout the organisation.

The PSG organised the first workshop to find out what people wanted the forum to look like on 22nd November 2017 in Huntingdon. The workshop was very successful with a packed out room and many gave their opinion on how the forum should work. We also went on to organise another workshop on 14th March 2018 in Peterborough to ensure we truly had a diverse range of opinions, which is exactly what we got!

Some felt it should be a more formal council or board and others a more informal approach without an interview process which can often become a barrier and weed out the very people we need to listen to the most! In fact a key point from the Peterborough workshop was to have as little barriers as possible.

The Pop Up Forum idea we came up with in the PSG was floated and like with the 2016 listening events everyone felt a pop up forum that went to the people was an excellent idea and ensured there was a more informal way to get involved, have a say or just to stay informed.

The “Pop Up Forum” idea was that when we had enough service users working within the trust at strategic level we could have two of them at a time to go out to various relevant community groups and share their current work and what projects they’re working on.

At the same time these community groups or charities can feedback through the pop up forum and ensure their opinions are represented by the forum and their voice is not only heard but acted upon.

By making links with key community groups we really have something very special as we align our objectives and ensure the services being designed or currently delivered actually meet the diverse and sometimes complex needs of those using them.

These Pop Up Forums would also help ensure new patients accessing services were signposted by the trust to the relevant community groups in their area as we build strong partnership working with these various groups doing some truly fantastic work.

Currently we have advertised involvement roles that require an interview stage and have had eight people apply which suggests this may have acted as a barrier for some. I know when I first started I would’ve been put off or intimidated if I had to be interviewed so this is something we may need to tweak or rethink after learning from those who went through the process.

My hope is once we all get through the interview stage and start to establish the forum we can negotiate a slightly different approach and ensure the Partnership Forum is just that!

We have had our CEO and other very senior managers passionate about this project leave and new ones come into post so it has been challenging to keep the vision intact and I sincerely hope my trust continues to work with us and not take over with all our hard work and progress we’ve made.

Often large organisations can take over these projects when they start to take off so it’s really important we establish a clear working relationship from the start that recognises this is very much a joint collaborative project.

The challenge with these projects seems to be the relationships between those in power and whether they wish to exert their power over us or be willing to actually work with us which sometimes means stepping back and empowering us to just get on with certain things and avoid micromanaging every decision.

Pop up Forum aside those of us who join the forum as Involvement roles will hopefully meet monthly in order to support each other and share our experience and expertise. I see this as slightly more formal than the Pop up Forum as we will be meeting with not just each other but with staff, governors, third sector organisations and it will be open to the public. We also plan to move the location around the county as CPFT covers a vast geographical area.

At these more formal open meetings we intend to work closely with the governors who hold more authority and powers to hold the trust to account, so it’s vital we work with them so any serious issues arising can be dealt with by the governors themselves.

We also have many staff at CPFT who are service users or have lived experience and they are often extremely passionate about improving services also and will be vital members of the proposed Partnership Forum.

Third sector organisations are continuing to take on more responsibilities as our NHS struggles financially with underfunding so again these are going to be vital members of the forum, ensuring the trust understands how far reaching some decisions can be and can often carry unintended consequences. It also makes sense to maintain and improve collaborative partnerships with colleagues in the third sector.

After meeting with our trusts new CEO (Tracy Dowling), it has filled me with renewed confidence and determination that we will achieve the above and overcome current and future challenges that will inevitably occur. Working through these challenges and differing opinions is where strong relationships are forged and this is what co-production is all about.

I often say “if it’s easy, it probably ain’t co-production!”

I’d like to dedicate this blog to Elizabeth Mitchell who was lead governor at CPFT for many years and an invaluable member of the PSG. We all had huge respect for Liz and she will be sorely missed and never forgotten. Our thoughts are with her family.

Since first writing The Partnership Forum was established on 04/10/2018 in its inaugural meeting. The PSG has closed with key recommendations to passed onto The Partnership Forum for consideration. SUN kindly held an evaluation day and has worked with PSG members to finish these recommendations.
The Partnership Forum has two involvement roles left to fill and will be going to advert very soon. Once those positions are filled we aim to continue to work with SUN and others to ensure we continue working in partnership with all community stakeholders.
Working with senior managers we have established that The Partnership Forum and truly is user led and hosted by CPFT, maintaining a level of independence necessary to perform its function.

If you have any questions or know of other examples of good practice, please leave a comment

Equal Partners?!?!

So I very rarely write blogs as I often lack the motivation or time as I struggle managing my own health. Depression is an ongoing battle that most of the time I’m winning but when challenged with those of intransigent views on what my role is or should be I find it very hard

Recently I made clear that the following quote should remain in our trusts Partnership Strategy which I was involved in writing

Equal Partners definition:

“Working together as equal partners with a mutual respect for each others experience and expertise”

I’m sure many of you are thinking “that’s bleeding obvious” as many of us have promoted this sentiment.

I’ve found that most staff in my trust either accept this or fully believe in it.

Now as we have integrated physical and mental health services we’ve had a welcome influx of staff from physical health who talk co production principles but often in very old tic box ways of doing things.

I was working with one person who couldn’t get his head around me being anything other than a “volunteer” who “represents the organisation and its values” with no choice on how my time will be used, other than very limited options

After time I managed to show him why working in partnership is so important and maintaining some, if not all your independence is crucial.

This person now sends me emails on all sorts of stuff around working in partnership and collaborative leadership which is fantastic.

More recently I’ve been up against it with another person from physical health who was taken on in a senior position. Its been tough going for us both as I’m not one for backing down and nor is this person.

The power imbalance has been extremely challenging and key to addressing this is the basic co production principle of the quote above

I’ve been told that a service user can never be equal to a nurse, “because a nurse has responsibilities!”

This indignant response said a lot about how myself and others are viewed. That somehow we don’t have responsibilities or hold equal value.

To this I say, we all have responsibilities and those of us with long term conditions that have impacted our lives in ways many of you simply can’t imagine. We have the responsibility to keep ourselves alive and not give up. We often have loved ones we care for who also depend on us to keep them going.

Whose time is more valuable, a doctor’s time or a patients time?

Before you jump to an answer the patient is terminally ill with months to live waiting for the doctor to call them through. The doctor has all these qualifications but his time is limited between patients.

Whose time is valued more, the patient with months to live or the doctor who is treating them?

I’d answer the patient every time but my point is we must value them equally and respect the experience and expertise of them both

So why is it so hard to accept we are all equal partners and we both have ownership of the NHS. Why should a nurses time be seen as more important or the expertise of the patient not recognised or understood?

Most patients know just how much experience and expertise we have gained managing our own conditions and we also see the crazy system flaws that not only cause staff problems but those of patients too

Until we accept we are all equal partners and that involving patients as equals and from the start of a project is crucial, then the NHS will continue to decline and ultimately break if we don’t come together as one movement for change

Patient Leaders – what does that mean?

Love this David, so well put and spot on as usual. Dom x

Future Patient - musings on patient-led healthcare

Why we need Patient Leaders

The NHS loves to unleash (sic) its buzz words, euphemisms and catchy soundbites. I’m not sure which is more depressing. Watching their footprints (sic) come. Or go.

But the phrase ‘patient leader’ seems to be sticking. What does it mean?

To be honest, when it came into my head a few years back, I laughed – Put two contested terms together. Light fuse. Stand well back and watch the fun. Patient Leader – marmite. Love it? Hate it? At least we are talking still about it. I have seen people slip back into their chairs at its mention, others puffed with a new found pride at finding a stronger status – ‘yes, that’s me’.

It was also the culmination of other questions I had: what do we call idiots like me who, instead of just wanting to heal in peace, return to the NHS in…

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Mental Health Vanguard Launches County Wide!

Today a new mental health crisis care service was rolled out county wide in Cambridgeshire led by Elaine Young of Cambridgeshire and Peterborough Foundation Trust It includes a 24/7 mental health crisis number through the NHS 111 number (under option 2).

First Responders could be deployed or even lead to being triaged through to “The Sanctuary” a safe place for people in crisis run by Mind in Cambridgeshire or indeed the new Sanctuary in Peterborough that officially opened its doors today.

Mind in Cambridgeshire have been essential partners in making this project happen in my opinion.

Further Sanctuarys are opening in other areas too such as Huntingdon and includes a place for children and young people. 

You can now self refer into this 24/7 service or have a friend or family member call in on your behalf.

Before this Vanguard project, mental health crisis care in Cambridgeshire was extremely limited. This often resulted in people in crisis turning up at A&E with no other option or indeed being detained by the police, both undesirable outcomes for someone in crisis.

This service is open to anyone of any age thus not overlooking children and young people whom often get left out in these new service roll outs so it’s clear this is an extremely ambitious project. It will hopefully be rolled out nationally with public support.

Another key part of this project has been including service users in the planning process and co-design of these services. Although not perfect I feel this has been an important part that I hope will be built upon in future projects nationally and locally.

As this new service takes on self referals the capacity of the service will be tested and will no doubt have teething problems. I’m confident these issues will be overcome as I’ve seen the passion and determination by all who have been involved in this project that spans many organisations throughout the community. This I believe is what has made this project a reality!

To read my previous more detailed blog on this new service please click HERE

Also please check out THIS ANIMATION in part produced with service users due to time constraints.

Please leave comments or questions about the project which I will try to answer or pass on to those that can

The Key to Mental Wellbeing isn’t always…..

​The key to mental wellbeing isn’t always accessing services. In fact it can make things worse and I say this talking from experience. 

I’ve grappled with mental illness from a young age and have accessed services many times through sheer desperation and a need to find out how to get better or name the illness that has robbed me of so many years of my life.

However many don’t access services at all, 70% of all people who take their own life have not accessed services within a year before their death and 76% of all suicides are men.

The reason for this is we don’t want to expose our vulnerability or burden our close family or friends, let alone seek help and be categorised as a “service user” or “client” as they are all very stigmatised words that rob you of any feeling of self worth.

With the 70% recorded as not accessing services we must have more help in the community without the stigma mainstream services often bring.

Accessing secondary care can be the most disempowering thing you can do. What’s more I’ve found some health professionals to hold more stigma than most people on the street.

I once had a psychologist that came to my home as I couldn’t even face leaving the house to make my appointment. Instead of being understanding and compassionate he went on a very harsh lecture telling me I had to “help myself” and “he couldn’t do it for me”. All true comments but coming from a person who’d only just met me and clearly angry he’d had to come to my house. He completely destroyed what little self believe or worth I had left. I told him to leave me alone and my mother gave him a few choice words as she ushered him out the door. What I needed at that time was somebody to understand what I was feeling and experiencing.

Now not all health professionals are like that but some have absolutely no understanding of what actual depression is or feels like. Even the ones that are good and want to help can cause you to feel weak and useless. They do everything right but the fact you’re even seeing them feels like you’re a complete failure. The longer you receive services the harder it gets to get well again in my experience.

The point I’m trying to make is we need alternatives in the community that are non clinical and don’t have the adult vs child relationship which it often feels like when you’re seeing health care professionals in a clinical setting.

Sometimes all we need is a place to go and talk to another person in the same situation or who has experienced mental illness themselves.

So why aren’t there places like that? Not everyone has friends in today’s world and apart from my social media folk and colleagues I work with, I’m one of them! Feeling isolated and alone is one of the biggest factors for me when it comes to feeling suicidal. 

After years of mental illness and associated self medication your friendship pool can drastically deplete and accessing services can often cause you to become even more isolated from making new friends and achieving a full recovery, although recovery is an ongoing process. 

I am getting better though and believe me it has come from repeated failure but I’ve somehow kept going. One of the things that keeps me going is the work I do trying to make services better and find alternatives in the community like “The Sanctuary” a safe place for people to go in crisis run by MIND and in a non clinical setting. You can read my related blog on it HERE.

As I continue to rebuild my life and yes make new friends I’m determined to create new spaces for people to go and just be natural without being called “clients” or even thought of as anything other than another human being whom just needs a friend or someone to talk to.

I’m passionate about giving people the tools to enable them to co-design their own spaces or even improve what’s already being done.

Maybe if we start investing in people whom are in recovery through giving them training, encouragement and a lot of self believe they will go on to create something incredible.

Just look on social media at the amazing ideas people have come up with that are helping people recover their old identities or rather create new ones, a new self that can see a way through the dark times and a network of friends that continue to keep them well and pick each other up if one falls down, which is inevitable and part of the recovery process. 

So in short I’m saying try services if you must but don’t pin all your hopes on them. There’s no silver bullet and getting a diagnosis won’t solve all your problems. 

Keep going and rebuild your life with a network of friends whether that be online or in the real world. It’s those people that will get you through and I’m lucky to have both in my growing network of people who support me.

If your feeling suicidal or simply sick of trying to get better then make sure you talk to one of the many organisations out there to help.

Why all A&E Vangaurds should include MH crisis care

In 2013 I took part in The Barker Commission which sought to advice government on the Future of Health and Social Care. It argued for a more integrated system which would bring savings but also for more funding per GDP for a health service fit for the 21st century that met the needs of the population.

Two years on I’m now apart of an extremely exciting project that puts real integration and parity of esteem for mental health at the heart of my community.

Eight Urgent and Emergency Care Vangaurds were launched nationwide but only three of these eight Vangaurds included mental health crisis care.

Often people in mental health crisis end up at A&E which apart from costing £2500 per admission is the worst place for someone in crisis, unless they have already inflicted life threatening injury or overdose.

Cambridgeshire and Peterborough Foundation Trust successfully bid for one of these Vangaurds securing two million pounds in funding to setup a new integrated system of services including a safe place called “The Sanctuary” and a 24/7 mental health crisis number manned by trained CPFT staff

Right now The Sanctuary has gone live and has taken seven visits in its first week and is being run by MIND in Cambridgeshire which shows how this Vangaurd is making use of the third sector, making it self sustainable whilst forming closer relationships with other organisations too which is so important and often overlooked in the past.

As this Vangaurd is in the early stages of funding and organisational setup, the  24/7 crisis line hasn’t gone live yet but will do once everything is in place.

We do however have CPFT staff in the police control room as 60% of police time is taken up with people experiencing mental health illness.

Not only are the police, ambulance service and third sector included in this ambitious project but also other agencies like housing whom play a big part when it comes to helping people in crisis.

The case has been long argued that by joining up services that not only pounds are saved but patients benifit too from this joined up approach.

Just think of the pounds and lives saved by putting someone in crisis, not in a police cell but in a safe place with trained staff from the third sector whom are more interested in talking to the person than constantly risk assessing them instead of just talking to them, which often happens in our understandably risk adverse mental health services.

Of course we need to ensure patients and staff are safe, but sometimes all somebody needs in crisis is a safe non clinical place with just another person to talk to, whom has experienced mental health crisis themselves in the past.

I’m hugely passionate about this project and I can only see the benifits if funded properly and patients not only listened too but involved like I am in the co design of this project as is happening in my area.

Naturally it is not perfect yet but with the help of the community and third sector the staff at CPFT whom are giving this project their all are making great things happen and as this project expands to include self referals and other safe places like The Sanctuary spring up in other areas in Cambridgeshire I can see the face of mental health crisis care in Cambridgeshire changing for the better and I hope will be a flagship project for the rest of the country to follow and learn from (including the inevitable mistakes!)

We are far from self referal at the moment until capacity is built up and more funding released upon proof the project is truly saving money through less A&E admissions and a reduction in police time ect but it is vital we get there as I understand 50% of suicides have not presented at A&E before, so self referal is going to be an important part of this project in the long term if we are to reduce suicides.

I know myself I never presented at A&E, I just took a shed load of pills and didn’t expect to wake up the next morning, so I know if I’d had the option of The Sanctuary I may have never gotten to that state of absolute irrational thinking.

As I continue to work on this project along with other service users I hope to ensure these services continue to meet the needs and expectations of service users that know just how important this project is, not from the perspective of saving pounds but lives.

To find out more about the Urgent and Emergency Care Vangaurds CLICK HERE

Gender Specific Mental Health?

I’ve been thinking a lot about the statistics on suicide and why nationally the stats on male suicide are so much higher with 76% of people dying by suicide being men, compared to 24% of suicides being by women. That’s over three times the rate of women.

In 1981, 63% of UK suicides were by men, compared to 37% who were by women. Whilst suicides by women have stayed “consistently lower”, suicides by men has “significantly increased” according to the Office of National Statistics.

I’ve spoken with various professionals in mental health including my own therapist and of course some fellow patients like myself who access services.

Some thoughts are that it is down to the old adage of men not going to the doctor until it’s far too late or that the stigma around mental health being a “women’s thing” or that “men are strong” and so on.

Should we be using a gender specific approach or treat mental health as a one size fits all?

Just think about a mixed gender talking therapy group. Let’s say for argument a man who after years of hating himself for being “weak” finally goes to talking therapy and is the only male in the group which then reinforces his ongoing self stigma around him not being “normal” and that mental health is a “women’s thing”. Whilst I do think mixed gender groups can work well I see no reason for not having gender specific groups for men as already exist for women.

Biologically we are of course very different and this biological difference plays a part in how we form our gender identities as we grow older. Often men deal with their emotions in very different ways such as punching a wall or door as I’ve done myself on occasions. I would suggest testosterone plays a part here. I believe men with mental health issues often find themselves in a prison cell rather than receiving treatment.

According to the stats men are more likely to use drugs, especially alcohol to suppress their emotions, so violent outbursts or behaviour shouldn’t be too surprising, although completely unacceptable.

The stats show women are diagnosed with depression almost twice as much as men and according to the stats they are also twice as likely to go to their GP when feeling depressed. This could be down to many factors including women being more self aware of their emotions a study has found.

Let’s think about this, men are killing themselves three times the rate of women yet are only half as likely to be diagnosed with depression?

I would suggest men are experiencing depression in at least equal numbers but due to the way society reinforces gender sensibilities men suffer in silence, therefore explaining why so many more are killing themselves and why the stats are so low for men with a mental health diagnosis. Men also find it harder to express their deep emotions or articulate them in the same way women do, another study has found.

I’ve been reading different papers whilst researching this blog which at times has been a challenge as my own depression has got in the way. One of those papers that Damien Ridge, Carol Emslie & Alan White are authors of talks about the lack of research into “Male Distress” and raises social factors that can add to or even ignore this.

For example research into cancer doctors found they were more likely to offer emotional support to women than men. Gender sensibilities often affect us unconsciously and clearly this is the case here. I encourage you to read this paper.

I was pleased to be introduced to Dr Bob Phillips on twitter whom is a cancer specialist with young people. He recognised this unconscious bias in the paper and has challenged himself to think about the young boys he treats and if they are receiving the right level of emotional support, as we men often avoid admitting any vulnerabilities or ask for help before it’s too late.

I hope more doctors like Dr Bob challenge their unconscious stereotypes on what society has taught them to think when it comes to men and their emotions. I certainly know I’ve challenged my thinking on this as I’ve researched the very complex subject of gender.

Since starting this blog the moving documentary “Suicide and Me” has aired on BBC Three where Stephen Manderson aka Professor Green talks about his dad who took his own life. In response to the documentary I’ve seen reactions by women who understandably feel the rate of female suicide shouldn’t be ignored.

Firstly of course women who take their own lives is equally tragic and must be talked about too but we must ensure we don’t ignore the shocking statistic that 76% of all suicides are by men. I’ve often felt talking about suicide in general is received positively but when I’ve raised male suicide specifically, many but not all seem to go very quiet. Just like it is okay to raise awareness around violence against women, we must also find raising awareness of male suicide equally acceptable. Men experience domestic violence too but that wouldn’t be a reason not to campaign on behalf of women whom are often the victims.

To ignore the statistic of 76% of suicides being by men is to do both sexes a massive disservice as every brother, father or son has a sister, mother or daughter whom will be left with the horrific repercussions of male suicide.

“A single suicide is like dropping a pebble in a pond, the emotional ramifications spread like ripples through the lives of all who were related to and knew them; but unlike ripples leave a permanent imprint on the lives of loved ones with unresolved and unreasonable grief spreading through to future generations” says my very experienced therapist whom has helped me so much over the years.

Often services tend to reflect the people who use them and it is easy to put in systems or structures that help that demographic which is often women as I’ve raised above who use these services the most.

I remember being the only man in a group discussing naming a building which was supposed to be for men too, yet they were absolutely taken away with calling it “Blossom House”.

I tried to explain that this could make it very difficult for a man accessing services and how de-masculating the name was. After hearing view they saw I had a point and named it after a tree instead which somehow felt much better.

My point in telling you this is if women are accessing services nearly twice as much as men we are in danger of moulding these services around them, therefore risking marginalising men from accessing these services due to the stigma that mental health is a “women’s thing” or simply not providing a comfortable place where men can feel they belong too. If we want more men to seek help before it’s too late we must ensure those services encourage them to do so.

One of the reasons I try to talk about my mental health is that I want other men to understand it is okay and it’s not a “women’s thing” and that they are not alone.

However after much self analysis many of my friends are women and I feel comfortable talking with them, even showing vulnerability too, yet when talking to another man I find it much harder.

Showing vulnerability isn’t easy for anyone and for men even harder.

Back to the reactions of some to Professor Greens documentary I’ve seen both sexes refer to feminism and the changing power balance but I find this hard to believe as I think biology combined with social stereotypes is the most straightforward explanation. If you asked one of the 4,623 men who took their own life last year why they did I doubt feminism would be in the list of reasons.  I think feminism has done a tremendous amount of good challenging the social stereotypes I’ve mentioned in this blog. I believe women have rightly made significant strides in gender equality and I don’t see why men can’t also do this by challenging the old stereotypes society has put on what a “real man” is or is not. I think this has already started especially by younger generations of men who like Professor Green aren’t afraid to show their emotions.

It would be a massive mistake to pit the sexes against each other as the only way real change happens is when we all work together. When I see tweets about breast cancer or domestic violence against women I will often retweet to do my bit to raise awareness and I sincerely hope women will do the same for male suicide as if we men don’t talk to each other about it, maybe women can start the conversation by also spreading awareness, support or even starting the conversation with their respective partner/relative/friend.

So after raising many of these questions I am coming to the thinking that just like we have many organisations supporting women surely it is only right to highlight men’s mental health such as The CALM Zone currently does.

The CALM Zone seem to be ahead of society on this and are trying to mainstream mental health for men whilst providing a service specifically targeting men at risk of suicide.

I could be wrong but my understanding is The CALM Zone recognise that not enough men are accessing services or seeking help and realise they must go to them by working with well known men in the public eye such as Professor Green who is a patron of theirs.

Although going to men is a great approach it doesn’t mean we shouldn’t continue to ensure services are equally approachable by men as they are women. The hardest question is what can services do to ensure men do access services and not suffer in silence as seems to be the case?

I would say the first step would be by having a national strategy for men’s mental health as my understanding is we currently only have one for women which was surprising to learn in my research found in The Gender and Access to Health Services Study

If we really believe in gender equality then this must be reflected in health policy. To have a mental health strategy specific to women recognises women have unique needs so surely it is only right to have one specific to men. With the skewed stat of 76% of suicides being by men, I can’t see a more urgent reason to start one now.


Writing this blog I’ve neglected to talk about my own experiences on this subject and in order not to lengthen this blog any further I would like to simply say I’m very lucky to be here, due in no small part to my amazing mother who believed in me when others didn’t!

Much thanks to my Therapist and Dr Bob Phillips who have both been invaluable resources in helping me write this blog.

Depression, Leadership, Failure & Success!


I want to tell you about how depression has effected me over the past year. I’ve experienced depression & anxiety with a good helping of agraphobia most of my life but I’m going to try to focus on the last year as much as possible.

Although I suffer from depression & anxiety I’m a walking contradiction, as when things are going well I thrive on public speaking & generally voicing my opinion to whoever will listen. You just have to follow my twitter timeline to see this.

Before all my success last year I had been in a very dark place indeed but things were improving as I’d had a full gastric bypass losing over 12 stone in weight thus regaining some of the mobility I lost due to a car crash in 2008. I went on to be nominated by my NHS Trust for the Patient Leader Program run by The Centre for Patient Leadership which opened up my mind & got me realising I had some leadership qualities that I just hadn’t realised due to my lack of self worth.


I completely embraced this programme as it challenged my notions on what leadership is all about. It gave me new found confidence & I could see the potential in the concept of empowering patients to lead change, not be passive recipients of change.

I also saw that social media was essential if I really wanted to achieve meaningful change through connecting & working with others.

I went on to share my knowledge of social media with @JustineNHS whom I met through twitter, we founded #twitterschool hashtag to help encourage more NHS staff to embrace social media as a tool to connect them with their colleagues & patients who were already making the most of social media. Through these free classes our aim was to show the positives of collaboration through social media & provide a hashtag to introduce them to twitter. Dispelling the fear of the unknown & showing the possibilities it can bring was key, plus I like to think we made it fun too!

I went on to be asked by @VictoriaBetton to co create & deliver a presentation on social media at NHS Expo 2014 called “You Are What You Tweet” which was packed out and extremely successful.

The whole time all this was happening my depression and mental health hadn’t miraculously vanished, it was always there, sapping me of my energy, ability to focus and continually plaguing me with negative thoughts about my ability to hold it together or succeed in general.

However, I did hold it together, but the cracks were starting to show as I was neglecting the basics. You see it completely sapped me of energy making even small tasks seem insurmountable, yet I seemed to manage to get the big things done such as writing presentations and delivering talks on my personal experiences involving leadership, patients experience, collaborative working, social media and highlighting the growing movement of Patient Leaders which I’m very passionate about.

Looking back I neglected to talk about my current mental health symptoms as I just wanted to show I had the same abilities as anyone else and was “strong”.

I felt talking about my mental health would detract from the important work I was doing. I didn’t want people’s sympathy or pity either!

After NHS Expo I applied for and was accepted to join an “Expert by Experience” group put together by The Kings Fund as part of the independent Future of Health and Social Care Commission, lead by economist Kate Barker & found on twitter with this hashtag #BarkerComm

I met some incredible fellow patients and carers in the group who bought various expertise to the table. I felt incredibly honoured to be among such talented & experienced people.

It was a very challenging process but extremely rewarding in equal measure. I found myself drawing on the leadership skills I’d learned especially the skill of listening and understanding others points of view.

I feel I was at my best when doing this work and went on to be asked to talk at the launch event of the much anticipated interim report on 24th April 2014 at The Kings Fund.

I was at my highest point when doing this work; I truly thrived on it. My talk and blog on the report went down extremely well in the room and on social media leading to me being asked by The Kings Fund to do a talk on leadership at their Change Leaders event that they were putting on for senior managers and staff in the NHS.

So all this success was extremely gratifying. I felt a new found confidence in public speaking and enjoyed talking about my experiences.
However my depression started to really kick in again and my sleeping was becoming even worse than usual. In fact I remember at NHS Expo 2014 rushing to make day two of the conference where I sat down unbeknown to me next to one of my twitter idols @andrewspong. I soon realised who he was and intoduced myself before realising I’d arrived still wearing my PJ top, which made for interesting conversation!

So with my sleep pattern becoming increasingly erratic, I found it extremely hard to accept anymore speaking events. I feared falling apart as the lack of sleep was making me increasingly unstable and I knew it! I’d like to stress this particularly bad bout of depression wasn’t linked to what I was doing. Depression in my experience seems to rear its head with no apparent cause or reason. It almost feels like a cycle that over time I hope to manage but that only comes with more experience I suppose.

I insisted I could no longer do anymore public speaking knowing I was sacrificing something I really enjoyed doing but I knew I had to sort my sleep out so taking time out was right for me.

I got myself readmitted to mental health services and insisted on them giving me some medication so I could finally get the sleep I needed & get back to a regular sleep pattern but I was told after 3 months of waiting that no medication would work as I was already taking existing medication. All I wanted was to be seen quickly & given something to aid my sleeping difficulties but instead I found myself coming up against barriers that only delayed my treatment.

Five months on & following considerable decline in my mental health I finally got the meds I needed. It took me two referals & senior NHS staff whom I knew, to intervene so I could get the help I needed.

The new medication to my surprise worked incredibly well & I now sleep much better at night without waking up at silly o’clock. If only I could’ve had this medicine when I first asked for it months before.

The problem was that due to 5 months fighting depression and the system for treatment, I had continued to decline & although sleeping very well I was in the grip of severe depression feeling I had blown my only opportunity to be a success. I certainly no longer felt like a leader anymore. I was a failure yet again, yes I’d achieved much but I felt I just wasn’t made for this world. I hated myself again & continued to fall into a pit of despair.

I had neglected my personal hygiene & due to not even cleaning my teeth ended up needing extensive dental treatment & teeth pulled.


When depressed, your cognitive function is completely screwed up. I kept trying to read emails but couldn’t concentrate enough to read more than a few lines. In fact just opening my email app was becoming extremely hard as I was in full avoidence mode which is part of my PD diagnosis.

Although I consider myself intelligent & enjoy academic learning I also have issues with my cognitive abilities. After my father died in 1998 when I was 17, I went from recreational drug use to full blown heroin addiction before finally becoming drug & alcohol free in 2007 so my cognitive function could well have been effected by the copious amount of drug use but when depressed my symptoms are more prevalent so whether it’s from previous drug abuse or not, my cognitive function becomes much worse when in the grips of depression, so I strongly believe depression plays a big factor in this. (Also my previous drug use was a way of coping with my MH conditions).
Examples are I get names mixed up & words too. I also find it hard to follow conversations at times.

My thought processes tend to get jumbled & as my very good friend @allyc375 will tell you it can lead to some classic lines she often reminds me of, which make us both laugh!

In fact this brings me to the final stage of my most recent recovery. After many false starts I’m communicating with my very good friends via twitter & as you can see, I’m finally able to concentrate long enough to write this blog!


So this brings me to the end of my blog & I hope it goes some way to helping you the reader to either understand my perspective of depression or if you’re a fellow MH sufferer/survivor like myself you can identify with some bits, but I know we all experience mental health in our own way so possibly not all I’ve described.

Thanks for reading!

Dominic Stenning aka @Patient_Leader