Reflections on SRN "Recovery" DIscussions

 I attended an event hosted by Scottish Recovery Network & The Scottish Government last week around "Recovery".  It was a very interesting morning and I was absolutely delighted to see the mix of individuals engaging in the event.  There was a very high proportion of lived experience/peer led projects in the room which was very encouraging.  It helps encourage me to keep going.

I have tried to write this blog 3 times and I just can't say what I'm trying to say in a nice constructive way - so I'm just going to say it as it is.

• You cannot "do" recovery to people
• You cannot define what recovery means to another person
• Most NHS services (in my experience) are still too focused on medical interventions
• The 3rd sector projects that support & maintain recovery are NOT being well supported by local health boards and local authorities
• There needs to be a shift in power
• More peer led projects are needed to work alongside statutory services
• Recovery needs to start at grass roots in communities - therefor community projects need support from the top.
• I LOVE all my fellow heel diggers who are determined to make change happen (that includes many NHS staff!)  Keep digging in those heels as we WILL make a difference.

But yes - we are getting tired.  A message to the Scottish Government - stop pouring money into things that are not working and start listening to people who are on the ground working every day.  Start valuing your staff (that is every one of us at every level, NHS, LA & 3rd sector) - they are your biggest asset.  Policies don't make change happen - people make change happen.  Invest in people.

Self Management Champion of The Year - What it Means to Me

I am very delighted to announce that last week I received an award from Health & Social Care Alliance Scotland.  I was awarded "Self Management Champion of The Year" which was a very humbling experience as I sat in the room and heard about all the amazing work that is happening all across Scotland to champion self-management approaches. 
It is no secret that my self-management tool of choice is WRAP (Wellness Recovery Action Planning), and that I have been championing WRAP by delivering it all across Scotland.  However - WRAP is only one tool amongst many.  And what is important is that you find which tool - or combination of tools, that work for you. 
I have absolutely no doubt that WRAP works for me as if it didn't I am certain that I would not have collected the award last week or be out and about doing what I am doing in Hope Café Lanarkshire.  

You see, I live well now.  But I do not live well by chance - I live well by choice.  And life isn't perfect.  I still have days where my body and/or my mind hurt (often very badly), but something keeps me going.  My husband says its my sheer stubbornness (I disagree btw!).  I personally think that it isn't one thing that keeps me going.  I think it is a combination of many things that keep me well - and more-so keep me going when I feel unwell. 

Its passion for what I do, it's the want (almost need) to make a difference for others who may walk the same path behind me, or those who are currently walking it beside me but haven't had the opportunities I have had thanks to WRAP.    Its the fact that I want to no longer feel like I'm just treading water every day - I want to feel like I'm living!!    My friend got me this magnet that says on it  
"Life's journey is not to arrive at the grave safely in a well preserved body,  but rather to skid in sideways totally worn out shouting 'holy shit..what a ride!!' " 
I do personally hope that my body is still well preserved as I work hard at that lol - but you get the message. 

The absolutely best thing for me about receiving the award was that it is proof that things are changing.  No-one can "champion" anything unless people are willing to engage with what they are championing.  So people are engaging with self-management.  I don't care if they are engaging with WRAP specifically (although a little bit of support in this area wouldn't go amiss from my own NHS board - hint hint NHS Lanarkshire!!!)   What matters to me is that self-management is up there on the agenda with 'the high heid yins' who hold the purse strings.

It is not rocket science that a penny of prevention is worth a pound of cure, but it is taking a while for the penny to drop in the NHS.  If we can truly start to give people opportunities to learn about themselves and the conditions they live with, to make informed choices about treatment options and to play an active part in their own health care we are bound to see the benefits.  I know that in my case I now no longer feel like I live in my GP surgery and that the receptionists are the only people I speak to on the phone!!  There was a time where I had a standing joke with my GP that I should be collecting loyalty points because I was there that often.  I now actually quite miss her as she is a pretty fabulous lady. 
If I had not been introduced to self-management via WRAP I know that I would be still trooping in and out the GP surgery waiting for her to 'fix' me.  Thanks to what I have learnt I am now out there in the community making a difference.  And even better than that I am the wife and mum that I always wanted to be but didn't think I could be. 
Self-management is not easy - but by gum its worth it!!
D x

SeeMe14 Reflections, Who are we to Judge

I have had quite a few things rumbling through my head since SeeMe14 Agenda setting event - so taking a leaf out of my friend @micmacfisheroo's book I'm going to get them out of my head and down on paper.  You may not agree with them - and that's ok as we are all entitled to our own thoughts and opinions. 
I wasn't going to mention this - but then saw via another blog that someone else had felt similar. 
We spent lots of time talking about how everyone should be treated as an equal, see past the label of a diagnosis etc.  But underneath I felt that there were some rumblings around who has what diagnosis - and how bad is life for them in comparison to someone with perhaps a 'lesser' diagnosis. 
I'll try and explain what I mean. 

When I first shared my own story Behind Closed Doors, I felt like who the hell will be interested in my story.  Through work and personal life I had met people who in my eyes were living with a condition which was far more 'severe' than mine.  My own experience actually - in my eyes at that time felt shameful to me.  And when I looked at it in comparison to what other had experienced, and were still experiencing it felt almost wrong that I should share it.  But it was a massive part of my recovery to share it, to get it out there and to stop feeling ashamed around what my experiences had been. 
Because my condition, and experience was quite unique - and not in my head the 'normal' psychiatric experience, time and time again I tried to tell myself that it wasn't that bad - but it was.  It was complete and utter hell to me. 
This is what I suppose I'm trying to explain - that it doesn't matter what your diagnosis or experience with mental illness is, what matters is how it impacts you and makes you feel.  To me it's like these stupid pain measurement charts in hospital asking you to rate your pain.  Someone can rate the pain of a broken toe at 10 - yet someone else can rate the pain of terminal cancer as a 7.  This is why I feel that sometimes we are still focusing on labels rather than on impact of illness.  And that in itself, in my view is stigmatising and discriminatory behaviour.  Are we any better than those we accuse of stigmatising and discriminating against us - if we are also discriminating ourselves and others based on diagnosis?  I don't know about you guys - but for me self-stigma was horrendous. 

The first time I ever felt that my experience was actually validated was when I attended a WRAP course and I met my now WRAP partner and best buddy GG.  I knew GG through work, but wouldn't say at that stage that we were buddies.  One of the exercises we had to do was talk to the person next to us about our experiences, and GG was my partner.  We then had to introduce each other.  As I sat and listened to some of GG's story I was thinking to myself  'How the hell is this lady still alive, she is so strong, and imagine living with X diagnosis'.  I was then utterly astounded when GG introduced me to the group as 'This is Donna and I don't know how this woman is still standing'
I think if I remember correctly I just cried. 

This is when I truly began to understand that in my eyes a diagnosis is there to help medical professionals - and sometimes ourselves, to make sense of our experiences and try and find a way to treat the symptoms of our illness if we want them to be treated.  It is not there to define us - or to decide what quality of life we will or won't have.  Or at least it shouldn't be. 

In reality I know this isn't always the case.  Having spent 14 months working in an acute in-patient setting as a peer worker I met many wonderful people with many varied diagnosis's.  Staff often used words like 'severe, mild, moderate, enduring' which often confused me as lets face it every single person who was in those wards was there because their situation - regardless of their diagnosis had become so painful to them that they ended up in hospital.  Who are we to label it as mild, moderate or severe?  Each persons experience is their experience, and is unique to them.  We cannot make judgements on how much it impacts them.  Is my good friend GG's experience of living with a diagnosis of Schizoaffective Disorder and more or less painful than my other good friends experience of living with a diagnosis of Social Anxiety.  Who are we to judge?

This brings me nicely onto the other thing that has been rumbling through my head.  The discussions around the 'Recovery' movement.  What people thing about the word, the concept.  My take on it is that I believe in the concept of recovery but I am unsure about the word. 
I really wanted to attend the pop up workshop on this at SeeMe14 but it co-incided with another workshop I had booked into.  Like everyone's experience of mental illness is unique - I truly believe that everyone's experience of 'recovery' and what that means to them is unique.
 
As a WRAP facilitator we discuss the concept of recovery very early on in the WRAP process.  I am always honest and say that I struggle with the word, and that I prefer to think of it in terms of living well.  I often equate it to the word wellness. 

I have no idea if I'm 'recovered', I don't really care as what I do know is that I'm living well most of the time.  I still take medication, I still use various techniques and therapies to keep me feeling well.  I don't use formal mental health services as I have done everything within my power to stay away from psychiatrists since my only contact with them in my early 20's given the lack of understanding by them around my issues.  To me 'recovery' could be seen by some as a wee bit of a label too.  And a confusing one, especially for someone who is living with a diagnosis of a long term mental health condition.  I will use the example of my friend P who is living with a diagnosis of DID. 

I met P whilst working on the wards, and I felt extremely patronising when I started to try and plant the seed of belief that recovery was possible (as per my job description - to inspire hope that recovery is possible)  as lets face it P was going to be living with this condition for the rest of her life.  But it was a huge learning experience for me - and this is when I really started to understand that I had to change the language that I was using.  Instead of talking about recovery - a concept that P could not understandably relate to,  we started to talk instead about wellness. 
These conversations went on sometimes for minutes, and sometimes for an hour or two.  P still doesn't believe that she will ever 'recover', but thankfully she does know see that she can live well. 

SeeMe14 was an eye opener for me, it exhausted me, confused me in some ways, and gave me clarity in other ways.  But one thing is for sure - it inspired me to keep doing what I'm doing and that is to keep banging my drum.  I can't change the world but maybe I can help change one more persons world. 

Mental Healthcare -Parity of Esteem my A**e - Tragic Suicide

Firstly excuse my French, I don't swear a lot but this has made me feel so angry.  Today I read on Twitter that a lady called @silentlyana had completed suicide.  An tragedy in itself - but what makes it more of a tragedy is that TWICE in one day on Friday this individual asked for help and was sent away being described as 'manipulative'.  Today she is dead.
As I read Amanda Stands blog http://beautyfrompainblog.com/ about this tragedy I couldn't help but feel so sad for the loss of this young ladies life.  But like Amanda it was mixed with frustration, disappointment and even anger.  I didn't know @silentlyana, but I know and have worked with many people who have faced similar battles.  People who are reaching out for help when they are in great pain - and are turned away.  People who are called 'manipulative' and 'attention seeking'.  Like Amanda I also deliver various mental health training courses including Suicide Awareness/Prevention Training and these are common misconceptions that arise time and time again. 
I try to use my own experience of a suicide attempt to help people understand.  I explain it like this:
When you are actively suicidal, you are in pain.  ALOT of pain.  You very often cannot find the words to express how you feel.  You are past words, past cares, sometimes even past thinking because it's too painful to think. To ask for help takes a huge amount of courage and effort.
If at this stage someone reaches out and asks for help it beggers belief that they should be turned away and called 'manipulative'  Would someone presenting at A & E with a flare up of a long term physical health condition be sent away - or would the staff try and ease the pain?  No - never in a million years would they be sent away, so why the hell does it happen time and time again to people who are mentally unwell??
I would love to think that this was a one off incident - but sadly experience tells me it's not.  I worked in acute in-patient admission wards in Lanarkshire and on more than one occasion heard staff describing people as manipulative.  I of course challenged this, but as a peer worker at that time it was pretty clear that some staff on this particular ward had no respect for my role so I feel it fell upon deaf ears.
And the work that I do within the community, time and time again young people tell me of their experiences of attending A&E with self-harm injuries and being treated with no dignity or respect.  Being labelled 'attention seeking' , and in some cases even being told to apply their own dressings. 
People are in pain - they are not 'attention seeking', they are seeking your attention for a reason.  Please remember that. 
Rest in Peace @silentlyana, I hope that the people responsible for this tragedy are held accountable

How do we measure Hope and Compassion

For the last 6 months I have been working with a fabulous organisation in Cumbernauld called Now You're Talking.  I have been working with them to deliver 4 x 2 day WRAP workshops over a 12 month period for their members, funded by Alliance Scotland 
I came across NYT by chance way back in late 2012 and I liked the sound of what they were doing.  So I popped over to see the project for myself one day and from the minute I went through the doors I felt welcome.  On Tuesday the 18th March I joined NYT in celebrating their 5th birthday party, and also officially opening their community café - Happy Talk Café. 
Over 100 people attended, a fantastic and well deserved turnout.   In the crowd were staff from Department of Work and Pensions as NYT were receiving an award for being a Disability Friendly Employer.  There was also a really good turnout from other local voluntary sector groups including Voluntary Action North Lanarkshire who have supported NYT since day 1.  They presented NYT with a Volunteer Friendly Award in recognition of the fantastic volunteer opportunities they provide.
There was a noticeable lack of representation from the local health board and also the local social work department.  It is no secret that organisations that are peer led often are misunderstood and don't receive the support they deserve.  Maybe its because their achievements can't easily be measured in figures, spreadsheets and statistics. 
How do you measure the hope that someone gets from being involved with a project like NYT?  How do you accurately portray the levels of compassion found in organisations like these across Scotland?   The only way that you can do it is to walk through the doors and see and feel for yourself the difference that these projects are making in peoples lives.  Speak to people - listen to their stories and then decide if these projects are worthwhile.  I am so glad that I walked through the doors back in 2012.
As I venture into this world of social enterprises and peer led projects with my new project The Hope Cafe Lanarkshire, I am extremely fortunate that so far we have received excellent support and encouragement from our local authority and health board - and I hope that this continues. 
For organisations like Now You're Talking - my message is  simple - don't change what you're doing, because what your doing works and is making a difference to many many lives.  Keep your head held high and be proud of what you have achieved.  Don't let anyone dull your sparkle :)

And to anyone who doubts the value of a peer led project - take yourself through the doors.  Spare an hour to speak to people and listen to their stories - then make your judgements.

In memory

It's been snowing here lately.  I love snow - I find it extremely peaceful.  I think this is because on my birthday 4 years ago the woman I loved most in this world; my Nana, passed away.  It was the worst snow we have had for years - we did not know if we were going to be able to bury her but all I could think about was how peaceful it was.  How still and pure and white.  I remember going out for a walk the night she died and staring at the sky.  I was looking for the brightest star as ever since I was a child Nana would tell me that the brightest star was the person you loved the most shining down on you.  The snow was billowing down and I felt such a sense of peace.  Even although my Nana hated snow I believe it was a symbol to me that she was at rest and peaceful after a long battle. 

My Nana and Papa meant the world to me, I lost my Papa 7 years previously just before I got married.  Again it was very wintry - and a hard frost.   My Nana nursed my Papa through Parkinson's and Alzheimer's, a horrendous journey but one that she faced with such courage and determination regardless of her own disabilities.  They taught me what love means - that I am sure of. 
I was looking through my most precious possession tonight which is a little book of poems and verse's that my Nana kept at the side of her chair.  She used to write in it a lot, and it is full of the most inspiring little poems.  It literally saved me after she died as every time I read it I feel as if she is here with me.
Anyway - I found this poem which as I can't find anywhere on the internet - I am assuming was her own creation  - it's about Alzheimer's and Parkinson's - although I now believe that Papa had Lewy Body Dementia.

"Where have you gone to my husband, locked in your Alzheimer's shell.
Your dead eyes can only look forward to your own particular hell
You used to prowl like a lion now you merely shuffle along
Like a ship without keel or udder - shall we ever know what went wrong?
You died long ago my darling, I can only remember and sigh
Perhaps in your muddles perspectives - you get echo's of good times gone by. "

In loving memory of Nana and Papa who I dedicate the opening of my new social enterprise The Hope Café Lanarkshire to.
"The good we do is never lost, each kindly act takes root.  And every seed of hope we sow in time will bear its fruit"  From Nana's book

The importance of Self Advocacy & Education - Response from Patient Opinion Post

Recently I posted on Patient Opinion about my experiences of trying to access treatment to help me manage Early Menopause which you can read here if you so wish.

Patient Opinion is an excellent vehicle to exercise your self advocacy skills - it can get your voice heard and also let others know that they are not alone in the trials that they face.  It is also an excellent way to give good feedback - something that isn't given often enough. (reminds me to post about my wonderful GP)
I continued to chase up NHSGG about this appointment and lack of follow up, and I did eventually receive an appointment letter on Friday.  I also received a response via patient opinion that day.  Yesterday I took a call from a lovely lady who asked me to explain to her my frustrations.  I explained that firstly it was disappointing to be told that someone will be in touch in a few weeks and then have no response for months, regardless of chasing it up.  She agreed this wasn't good practice.
I then explained (as per post on PO) that I felt that the professional who dealt with me was imposing her own personal views on HRT upon me rather than fact.  Not having been in the consultation - she couldn't comment which I understand.  However this is when things started to go a tad downhill.

She then asked me to understand that the Dr may have been reluctant to provide treatment based on 'the risks' associated with the treatment.  I pointed out that it has been proven that there is more risk to someone my age NOT taking HRT (British Menopause Society & International Menopause Society), and repeated again that I have thoroughly researched this area.  I also mentioned that I am part of Menopause UK Network, and we have been inputting into the creation of the new NICE Guidelines to help ensure that women's voices and their lived experiences are being heard.  The initial scoping has just been completed and we will be playing an active role in the development of these guidelines.  She questioned the validity of various pieces of  research, stating she used to be an advanced nurse something or another.......and questioning if I was and I quote "medically trained"

SO here is my point - it has absolutely no relevance if I am medically trained or not.  I am living with this condition day in and day out and have been doing so for the last 4 years.  I also happen to be someone that I would deem to be well educated both academically and more importantly in valuable life experience.

This is the best way I can think to compare it to try and get medically trained staff to start to LISTEN to their patients living with long term conditions:
Before I had children I worked in early education, I spent all my days working with children.  I thought I knew all there was to know about children.  I read more books than I care to remember whilst I was pregnant with my own children.  I considered myself to be an EXPERT when it came to children.  BUT - and it's a big BUT.........when I had my own children I suddenly realised no amount of education, experience or books could have prepared me for the real life experience of actually living with children 24/7.  Do you see what I mean?

So Dr's and other medical professionals I am asking you from the bottom of my heart - please start to listen to and work WITH the people you are supporting who are managing long term conditions.  Yes you are the expert in your medical field and we respect you for that.  However  people like me who are living with a long term condition - many of us are experts in our own lives.  Please respect us for that.  As my good friend Chris Young would say "Walk a mile"

I'm unsure how I feel about the outcome - I will wait and reserve judgement after my next appointment.  However I do feel strong and assertive, as I have educated myself well with the fantastic support of my GP and my peers.  Knowledge is power when applied - and believe you me I will be using all my self advocacy skills and knowledge to continue to fight for my right to access good treatment.  I'll keep you posted ;)

Oh and if we have ladies reading this who would like some invaluable peer support to help them manage Early Menopause please visit Daisy Network,  Menopause Matters, Hyster Sisters or our friendly peer support group on Facebook