At the beginning of last year, Robert Watson wrote for us about how respite care for people over 21 is scarce and current provisions are being cut. To make the Government take notice and to eventually rectify the issue, Robert has started a petition, which he has since presented at Scottish Parliament.
For many years myself and a number of your adults with Dunchenne Muscular Distrophy and other life-limiting conditions in Scotland, have used the services of the Children’s Hospice Association Scotland (CHAS) for respite.
But in May last year the CHAS announced that it would be putting an age limit of 21 on using the services, meaning myself at age 28, and many others, would no longer be able to get respite care.
As I am sure many of you would understand, removing this lifeline will massively affect our lives. For many, it is the only time when we get a break from our parents and equally a chance for our our parents to relax and recharge their batteries. For some of us who are often quite isolated at home, these breaks may be our only opportunity to socialise with others of a similar age.
Currently, all adult hospice services are set up largely to cater for much older adults suffering from cancer and other terminal illnesses, and some of these hospices often don’t provide respite breaks, just end-of-life care. These are just as unsuitable a place for our age group to go to as young children’s respite services are. We find ourselves stuck in the middle with nowhere to go.
So it was time to do something. As a group of young adults who use the services of CHAS formed the What About Us? campaign group of which I am the chair. We have regular monthly meetings with the goal of working on the adult respite campaign to try and take it forward, find out if there are any suitable adult respite services out there that we may have missed (there arent!) and to launch a petition that we can take to the Government to show this is a real issue.
Coverage and support since the beginning
Since the petition was launched in mid-May, support has grown and the petition now has over 1,700 signatures, which shows just how important so many people feel this issue is.
From the very beginning the petition has gained coverage: a couple of articles in Scottish Herald newspaper; I wrote an article for the Muscular Dystrophy Campaign’s Trailblazers blog, and of course there was the article here on the Disability Horizons website.
But getting coverage wasn’t enough, we needed to get it in front of those in power and get decision makers on board.
The first step was to contact a number of Muscular Dystrophy charities. Collectively those involved in campaign group wrote a letter to the Chief Executive of the Muscular Dystrophy Campaign (MDC) and Action Duchenne, detailing the CHAS decision and what we feel needs to be done to address the situation. Both charities are happily committed to supporting this campaign.
MDC has created a questionnaire to gather people’s experiences of respite provision, and they plan on presenting the findings of this to the Government so those in power can see the full extent and effect of the issue. Action Duchenne have been spreading the word of the campaign to all of their supporters and they supported me in my preparations for going to Parliament, helping me to put together a press release about the event.
A few of us have also attended a few MDC and Action Duchenne meetings to talk about our campaign, and in October I attended the MDC annual Scottish Conference where I did a 15 minute presentation to a large audience about the adult respite campaign.
Clearly though, we wouldn’t get very far if we didn’t raise this issue with the politicians who have the power to make change happen, and the goal of the petition was to gather enough signatures so that we could take the petition to Parliament and show them just how much support we have.
Instrumental in helping us to get the petition to Scottish Parliament has been the involvement of the well known Scottish Labour MSP Jackie Baillie. Ms Baillie is already involved with the Muscular Dystrophy Campaign as she helps organise the Cross Party Group meetings on MD that are held at the Scottish Parliament. Jackie’s influence was crucial because she was able to make sure that my petition was chosen to be presented to the Scottish Parliament’s Public Petitions Committee.
When it came to visiting Scottish Parliament, we wanted to invite as many other young adults, along with their families and supporters, as possible to go come to the Scottish Parliament so that we could stand outside and show them how much this means to us. Along with media coverage involved, we knew we would really have a powerful voice.
The day at Scottish Parliament
The big day arrived on Tuesday, 26th November 2013. Naturally, I was feeling a lot of nerves on the day about presenting to the committee, but I needn’t have worried as it went very well!
Here is a summary from the minutes of the meeting of what happened:
The Committee agreed to write to the Scottish Government, the Scottish Partnership for Palliative Care, Health and Social Care Alliance Scotland, a selection of local authorities, NHS Scotland, the Muscular Dystrophy Campaign, COSLA and relevant cross-party groups. The Committee also agreed to hold a Chamber debate on the petition.
The Scottish Parliament’s Public Petitions Committee generally don’t just decide to take any old issue to the debating chamber; they will do so only after careful consideration and after a few Committee meetings. So for them to make this decision, and to make it so quickly, shows just how seriously they are taking this issue. Even Jackie Baillie, who has seen lots of petitions presented to the Committee, was surprised at their decision. So that is an excellent sign.
The whole presentation was broadcast live online, and the recording can be watched in full by going to this BBC page.
It was a bit disappointing though that no press turned up to cover the event, however it was unfortunate timing because the Scottish Government’s Independence Bill was being launched on the same day. I had emailed various media outlets to try and encourage press interest, and we all got in touch with all of our contacts to try and get as many people as possible to come along and support us.
These factors, however, were beyond our control. The main thing was that the presentation to the Committee could not have went any better, and hopefully the press will come out in force when the debate day arrives.
The next step will be for the Committee to write to all of the different organisations to seek their views on the petition and await the responses to come back in, after which I will then have the opportunity to comment on them. Then the big event, the Chamber debate, should take place sometime in April or May.
In the meantime I, along with everybody else on the campaign group, will continue to spread awareness of this campaign and hopefully keep those petition signatures rising. I will keep updating all the media contacts with the progress of the campaign, hopefully leading to a lot of interest when the debate day arrives. Indeed the BBC have already committed to covering the debate when it happens.
So all that’s left for me to say is thank you for taking the time and effort to read about our campaign. If you can spare a few more minutes, it would be great if you could sign my petition and then share it with everyone. Its the only way to keep the campaign growing and with it keep the pressure on the politicians to do something about the lack of adult respite services and facilities. I really appreciate your support, it means a lot to me and so many others.
By Robert Watson