Shout it to the top - campaigning for better mental  health services

Note: This is an edited transcript of an interview with Kirsty Scott and Kathy Gilliland, both of whom are activists with the Mental Health Rights Campaign,  at a meeting in Mindwise on 25 July 2018.  These two women are strong, brave, smart, funny and cheeky!  You will be inspired by what they have to say about their fight for better mental health services for all.

 

Q: Can you start by telling us a little about yourself and how you became involved in mental health rights campaigning?

Kathy: I’ve been involved in the Belfast Mental Health Rights Group, which is a member of the Mental Health Rights Campaign, for ten years now. I have been a user of mental health services since my early twenties. I’m originally from Manchester but have been living here for 30 years now.

Over the years I have had experience of going into hospital due to mental ill health. None of those were good experiences. You were just taken in and left, there was nothing going on, no crafts, no exercise, patients were just left lying on beds.

I thought this was terrible, I thought this is my experience.  But it is not just my experience, it’s a lot of people’s experience. You never hear of people coming out of mental health places and saying ‘they were really good in there, I’ve learnt something from that, you just don’t get people saying that’.

So as I started getting better, even in hospital, my personality would come out, I would start telling the doctors and nurses what I thought. When you are very ill you can’t do that, but you see it more clearly then.

So through all that, and struggling to bring up a baby and a 3 year old, then one day Steph ( PPR worker) came into the Shankill Women’s Centre and asked if anybody was interested in getting involved in campaigning. I’d been saying for a long time ‘I want to be involved in this, I don’t just want to be a person who has been a patient, I want to actually know what’s going on and be able to change that, so that’s really why I started to change it. So it was basically through my own experience and enthusiasm, and then I like working with people as well.

 

Kirsty: I actually got involved after the death of my 19 year old son.  I had been campaigning to get justice for him for what happened. Mistakes had been made and I got inquiries, I got places, things changed, I got people saying sorry, and I kept battling on. Then 18 months after the death of my son my husband, died of a heart attack aged just 52 years old, through the stress of it all.

I joined the group to try to get more information and to make changes on a larger scale. Some of the changes I’d succeeded getting made were little, some were bigger, but I thought if you stand together with other people you’ll get further.

 

Q Can you tell us about the two mental health campaigns you are currently involved in?

Kathy: I’ll talk about the 123GP campaign. People had been bringing up issues around accessing mental health care from your GP for years, so in 2016 we carried out a surveys and focus groups with people to identify the issues. A huge range of issues were identified, from getting an appointment  to getting past the receptionist ( !) to lack of GP expertise, no access to counselling and over prescription of medication. We decided to concentrate on the issue of GP expertise and came up with 3 solutions which are 1) provision of access to counselling in GP practices  2) mental health and suicide prevention training for GPs and 3) a mental health worker employed as part of the primary care team.

We published a report ‘Beyond a Spin of the Wheel’ in June 2017 and since then we’ve secured over 2000 signatures for our online petition.  The campaign has been focusing on getting the Health and Social Care Board to improve funding for and access to counselling in GP practices.  We were shocked to discover that only two thirds of GP practices provide access to counselling within their practices. We were even more shocked to realise that the average allocation per patient for counselling amounts to £2.29 – the price of an ice-cream!

Q: Who have you met with so far?

 We’ve had some really good meetings to date with agencies and organisations, including with the Royal College GPs, the GP Federation, the Northern Health and Social Care Trust and the British Association of Counselling and Psychotherapy. We are looking forward to our meeting with the Health and Social Care Board later this month, as they are the body with power to improve things. We are hopeful that they will respond positively to our proposals.

Kirsty: I’ll talk about the SAFER campaign. When people are bereaved by suicide or any sudden death, within a few hours you have a policeman asking if you want any help. We don’t feel this is the time or the appropriate professional to do this. We are campaigning to improve the system which refers people bereaved by suicide to support.  We came across a system in New South Wales in Australia which is led by the Coroner’s Office and there is a much higher uptake of support there. This is important because people bereaved by suicide suffer from higher rates of mental ill health themselves and are 3 times more likely to attempt to take their own life. We think a similar system here would iron out some of the problems with our system such as being asked too soon when you don’t know what you need or want. The system over there also has specially trained people to contact the family in the first instance to offer support. This first contact and offer is really, really important and must be done in a very sensitive, understanding way. The way things are done are just as important as how they are done in my experience.

We are asking for it to be done in a more humane way and not straight away after a death.

 

Q How did your group decide on the changes you wanted to see made?

The way we’ve gone about this is by hearing people’s stories. We’ve talked to people who have been bereaved by suicide, and nearly every single one of them said they either can’t remember being asked or that they weren’t asked. Bereaved families have to speak to the Coroner so we think it’s a good idea that it’s the Coroner’s office who asks about the provision of support.

 

Q What’s the best thing you’ve got out of being involved?

Kathy: I’m the kind of person who would go off like a rocket up into the sky. If I don’t agree with something I’ll get really angry and just go off . To me there’s not many places you can be yourself and do that. They just ignore me most of the time! Oh, and I fell in love twice, with two MLAS, but that’s a whole other story as they say!

Kirsty: I think it has helped me move on, to focus less on the deaths and more on changing things.  Campaigning has helped me with the grieving process because I felt I was changing things. If I can do something different, by joining together with people to do it, and if I can just save one person’s life then I’ve done something with my life. If my story can help one person and if by telling my story it helps other people to go out there and fight, then I’ve achieved something in life.

 

Q What have some of the challenges been of being involved?

Kathy: My experience of working with the Health Trusts on the Card Before You Leave scheme ( Hyperlink this). Some of the Trust staff thought they knew everything, that was their attitude as workers. We soon rubbished that idea! If you have a condition, and you’ve had it most of your life, you are the one that knows what that’s like, nobody else can tell you, yet they were trying to tell us they knew better than we did.

Kirsty: I have a 28 year old son with special needs so it is challenging getting back and forth to meetings and other campaign actions. Also, even though I am widowed with a son with special needs, there is absolutely nothing by way of support out there for me.

 

Q If you had one top tip for people interested in getting involved in campaigning, what would it be?

Kathy: I’ve been thinking about the Suffragette movement. They started very quietly and slowly , and then some of them became very radical because they weren’t getting anywhere. I think sometimes you have to say it as it is, you have to go out there and say no, this isn’t right. I would be on top of the mountain if I could get there, which I can’t, and shout!

You need perseverance when you are doing this week in, week out. Sometimes I go to that many meetings I forget what meeting I am in. You also have to have a sense of humour!

Kirsty: Your story is important. When we go to meetings with those in power we are telling our stories, telling them what has happened. They sit there and tell us all these things, we do this, we’ve got the other, but they don’t know what it’s like, its not real to them. It doesn’t matter how small a story it is, there’s going to be somebody with the same story and they will listen to you and it might change their lives. So tell your story and stand together with other people. On your own you are just a little voice, but if you stand together you might just get heard. Oh, and you have to be cheeky!

 

If you are interested in finding out more or getting involved with any of the mental health rights campaigns you can email us on sara@pprproject.org or telephone 028 90 313315. We’d love to hear from you.