When you Wish Upon a Star (And you have the passion that lived experience brings...)

Tonight I worked alongside 3 volunteers from Hope Cafe as we worked hard to get the cafe ready for opening.  I cannot even begin to describe what it feels like to have achieved this dream.  So so so many years of thinking "you can't, you shouldn't, you won't, you will fail" have finally turned into "I can, I will and now I have!!"
In the words of Jiminy Cricket (many fond memories of watching this with my beloved Nana)

"When a star is born
They possess a gift or two
One of them is this
To make your dreams come true

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dreams
No request is too extreme
When you wish upon that star
As dreamers do

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longings

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon that star
Your dreams comes true

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longings

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon that star
Your dreams comes true"

 

Thank you Nana - always in my heart and dreams xxx

Enjoy https://www.youtube.com/watch?v=jGP-1eMgzUE

Social Enterprise - A New Way To Do Business

Thought I would share with you a piece I put together for high school students that I was asked to speak to about business.  Writing it made me realise how very very fortunate I am to be able to run a social enterprise.

Have you ever thought about running a business that wasn't necessarily about making you rich?  What if you thought about running a business that made you happy?

Is money what makes your world turn? Or is it happiness, compassion and a sense of satisfaction?

If you answered yes to the first question then social enterprise is probably not for you.  However if you answered yes to the second question then it most probably is.

Social enterprise is a new way of doing business.  Well,,,,I say it's a new way but I actually don't think it is.  I think that its the way that business used to be done before we got so caught up in this rat race that is life.  It s a way of doing business that helps your neighbour as much as it helps you.  If we turn back the clock to the years where my Nana was growing up it seems to be that life was about helping others.

What has changed?? 

The answer is quite simply life has changed.  We live in a society  where its all about what you have got in your life.   But is that what really matters?? 
At the end of the day - we ain't getting out this adventure called life alive no matter what way we look at it.  And in reality the only legacy we leave in this world is two things - the balance we have in the bank and the difference we have made. 

Personally I would much rather tick the second box.  You see my social enterprise will never give me a big bank balance.  My social enterprise wont have me rubbing shoulders with the elite in society.
But.. my social enterprise makes me rich in ways that I cannot even begin to describe. 

Every single day I meet people who inspire me.  People who are fighting battles, personally and professionally to make life better for those experiencing mental ill-health.  These people are strong, beautiful and inspiring.  They fill my heart and soul far more than any amount of money ever would.
They show me that amongst all the doom and gloom in the world - that there is hope.  That people care for each other.  And that people have the ability to make the difference that is needed in the world.

My social enterprise won't make me rich - but it will pay me enough to pay my bills.  I'm not going to pretend it isn't hard to look around me sometimes and think "I could/should be earning more".  There are days when I think - "what the hell am I doing???  Will I ever made a REAL difference in this whole mucked up world?? - what is the point in trying??"  But I would have those days anyway no matter what type of business I was running.

But with a social enterprise that is balanced out by far by the positives of the job.
I know that change happens one person, one attitude at a time - so I keep going.  And I am never far away from the next reminder of the difference I am making. 
So please - consider a social enterprise as a way of doing business - because doing good really does you good!!

Lots of interest in lived experience - but no money to pay for it.

Please excuse if this sounds a wee bit like a rant but I wonder if others are sharing my frustration. 
There is a lot of interest at the moment around using lived experience to inform services etc which is absolutely fantastic.  I have received many many requests over the last few years.  This is 100% a move forward in the right direction.
However - it seems that in most cases there is "no budget" to pay for it.  HHHMMMMM

I have worked in the NHS and I now work in the voluntary sector - I know money is tight.  But if the big organisations and the LA's and NHS think they have it hard - try being a small voluntary organisation, 
Try working 40+ hours per week and getting paid part-time.  Try running a project on a shoe string budget but trying to make it the best it can be to prove its value and worth to  said LA's & NHS in the hope of a flake of dandruff from their budget in order to sustain your project.  Try telling people that their experiences are valued and important - but then tell them they are not valuable enough to be paid for.
This really isn't meant to be a rant - but its a realistic view of what I have seen happening over the last 2 years. 
I am living in hope that with the integration of H&S Care and the strong focus on peer support and self-management within the MH Strategy - that we may start to see a shift not only in the talk - but in the walk.  Lets see some real shift of budgets to enable people with lived experience and their inputs into projects and services be valued.
In the meantime, yes we will do it free of charge.  We will fuel it as usual with the passion and determination that keeps us doing all of the above.  Because if we don't nothing will change.  I wonder....are we doing the right thing??
 

How WRAP really helped me in 2014 - Focus on whats strong

As we move into 2015 I can't help but reflect back on 2014 and think WOW what a year!!  I can honestly say that 2014 has been without a doubt the best year I have had for as long as I can remember. 
It hasn't been an easy year - far from it.  Health wise I have embarked on a new treatment regime which has as always had its ups an downs and affected both my physical and mental health.  In terms of work I have never worked so hard and given so much of myself before.  Family wise my boys continue to grow and there is the little part inside me that aches every day with the pain of knowing that there will never be another little one in our family courtesy of my fertility being taken from me by illness.
However - a very strange thing has occurred.  Regardless of all of the above I can honestly say hand on heart that this is the first year in at least 10 years that I have not had a significant downturn in my mental health. 
This year has been different and reflecting back I understand why.  This year I have 100% put my WRAP to work, but more than that I have truly embraced what is known as the "assets based approach" to life.  In simple terms - focusing on what's right not what's wrong.   
Looking back I think that this seed was planted when I first encountered WRAP. WRAP very much encourages you to focus on what you can do - not what you can't.  It has been a seed that has taken time to grow, but it has slowly blossomed and it now feels like its strong and rooted. 
I didn't waken up one day and BOOM life had miraculously changed, I worked on change.  I worked on really trying hard to see the positives in each situation rather than the negatives. 
I really started to self advocate with regards to my health & treatment options and this has led to positive change.  I entered my new treatment regime with an optimistic but realistic view - that things were going to be rocky but I had the tools and support to deal with it.  And I did deal with it (and still am).  My knowledge of both myself and my treatment options have aided this process greatly - without them I would still be stumbling around in the dark. 
I literally took the bull by the horns and decided that if I wanted my life to change then I needed to change it.  I needed a new challenge and wanted to make a real difference for others who are living with long term health conditions that affect their mental health.  But I needed support to do it.  So I asked for help - simple!  And before I knew where I was I had registered a charity and secured funding for a new project, The Hope Café.  It was as much of a shock to me as it was to my long suffering and ever so patient husband who simply said "you've done WHAT???"
And that is the biggie in all of this - the little but large thing called HOPE.  The very first key concept that underpins the WRAP programme.  With it you have everything - without it you have nothing.  Hope has been the fuel to my fire in 2014 and I carry it forward into 2015 in abundance.  Hope is unique to each individual - but what's important is that you have it.  In 2014 I found it in abundance from the people who surrounded me, supported me and believed in me.  There were times where things went wrong, times when things didn't work out quite as planned but having hope and a belief that things would and could get better absolutely carried me through what has turned out to be a fantastic year. 
So below are a few of the little sayings that struck a cord with me and helped me in 2014 - I hope they help you.  And if you would like to learn more about WRAP and The Hope Café Self-management Peer Support project why not come along to our information session on 20th January and say hi - details here http://hopecafelanarkshire.org.uk/news/want-find-out-more-about-hope-cafe-come-chat-us-January

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.