IT'S NOT ROCKET SCIENCE.... |
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Heather Smith is one of our Campaign Champions for our 'Don’t let me die without a voice' campaign. Heather tells us about her experiences caring for her partner Steve who lived with motor neurone disease (MND), and the challenges they faced accessing and co-ordinating his care.
It's not rocket science…
My partner, Steve, died in March 2012 after living with motor neurone disease (MND) for 2 years and 7 months. I had known about MND since hearing about David Niven when I was a young child and, again later, through my professional career. When Steve was diagnosed in August 2009, I knew the range of things that could possibly happen. What I didn’t know was how convoluted, difficult, and tiring navigating the Health and Social Care system was going to be. Surely it couldn’t be that difficult, surely ‘it’s not rocket science’ to provide the right care in the right place at the right time?
Steve delighted in people saying 'it's not rocket science', largely because it gave him the opportunity to say, 'I used to be a rocket scientist, do you want to know what rocket science actually is?' Sensible people said, 'No, thank you' and moved along…others, who did not, were treated to chapter and verse! Much as I laugh at that memory, it clearly did seem to be that difficult for the needs of someone living with MND to be communicated easily, if at all, around the various services which are required.
Steve placed an enormous amount of trust in me as his carer, and I had an incredibly steep learning curve. Initially, there were lots of people to meet and that was useful because it helped us know what help was available. And, many of the Health and Social Care professionals that we met were, individually, very helpful. However, we quickly realised that every time we met someone new, we had to start the whole story right from the beginning. Steve and I were able to talk about our lives with MND quite openly but it was still incredibly tiring to have to do so over and over again. Due to the nature of MND, the amount of time it wasted was magnified. It made us think what it must be like for people who did not find it easy to constantly talk about their circumstances.
Due to the poor communication, I found myself not just being a carer but also a Co-ordinator of a range of services, alongside supporting Steve to fulfil his wish of working full-time, doing so myself, and, most importantly, making sure we both had fun! The challenge for all carers is to try and remain in the 'role' that they originally had in their relationship with the person living with MND – partner, husband, wife, parent, sibling, child, etc. Becoming a fully-fledged 'Project Manager' should not be necessary if the service professionals knew more about MND and communicated effectively with each other.
I became involved as a Campaigns Contact for our local group (North Wiltshire) because I felt that I could share Steve and my experience – both the good and the bad – and try to help improve the situation for other people dealing with MND. I have lost count of the number of times that people have said 'we need help co-ordinating all of the services that we have to use'. Our group has worked hard to raise awareness of the need for MND Co-ordinator roles in the NHS and succeeded last year in getting a one-year post in place locally which, although not a fully-fledged Co-ordinator, started to fulfil an element of this work. People living locally with MND have said what a huge difference this post has made to their lives…now the work continues to retain and develop the post, and prove its worth to other areas across the country where this role is not yet in place.
One of the toughest parts about being a carer for someone with MND knows that, at the moment, MND will at some stage take them away. You have to care for yourself so that you can continue to live on after that happens. The whole experience of life with MND, including the way in which the Health and Social Care system does or doesn’t support you, can leave a legacy on how you are able to pick yourself up and carry on. The more difficult the experience is, and the more exhausting the battles for good care are, the harder it can be. I will continue to campaign for greater application of common-sense in organising care for people living with MND, giving them the independence of choice that everyone deserves, and greater care for carers, finding support when and after the desperate life changing event happens.
How you can help
We're now only a few weeks away from the general election, which means there's only a limited time left to influence your parliamentary candidates and ask them to commit to working with us on this important issue. Please help by sending your candidates an email and asking them to sign our MND Charter.
If you have more time to give, please attend a local hustings event. Hustings provide an opportunity to talk to candidates about MND and the issues affecting people locally. One of the candidates at your local hustings will be your next MP. The aim is to have as many MPs in Parliament who know about MND and the challenges people face. Please read our handy hustings guide for tips on making the most of question and answer sessions with your local candidates.
For more information about our campaign on access to communication equipment for people living with MND please visit www.mndassociation.org/voice
It's not rocket science…
My partner, Steve, died in March 2012 after living with motor neurone disease (MND) for 2 years and 7 months. I had known about MND since hearing about David Niven when I was a young child and, again later, through my professional career. When Steve was diagnosed in August 2009, I knew the range of things that could possibly happen. What I didn’t know was how convoluted, difficult, and tiring navigating the Health and Social Care system was going to be. Surely it couldn’t be that difficult, surely ‘it’s not rocket science’ to provide the right care in the right place at the right time?
Steve delighted in people saying 'it's not rocket science', largely because it gave him the opportunity to say, 'I used to be a rocket scientist, do you want to know what rocket science actually is?' Sensible people said, 'No, thank you' and moved along…others, who did not, were treated to chapter and verse! Much as I laugh at that memory, it clearly did seem to be that difficult for the needs of someone living with MND to be communicated easily, if at all, around the various services which are required.
Steve placed an enormous amount of trust in me as his carer, and I had an incredibly steep learning curve. Initially, there were lots of people to meet and that was useful because it helped us know what help was available. And, many of the Health and Social Care professionals that we met were, individually, very helpful. However, we quickly realised that every time we met someone new, we had to start the whole story right from the beginning. Steve and I were able to talk about our lives with MND quite openly but it was still incredibly tiring to have to do so over and over again. Due to the nature of MND, the amount of time it wasted was magnified. It made us think what it must be like for people who did not find it easy to constantly talk about their circumstances.
Due to the poor communication, I found myself not just being a carer but also a Co-ordinator of a range of services, alongside supporting Steve to fulfil his wish of working full-time, doing so myself, and, most importantly, making sure we both had fun! The challenge for all carers is to try and remain in the 'role' that they originally had in their relationship with the person living with MND – partner, husband, wife, parent, sibling, child, etc. Becoming a fully-fledged 'Project Manager' should not be necessary if the service professionals knew more about MND and communicated effectively with each other.
I became involved as a Campaigns Contact for our local group (North Wiltshire) because I felt that I could share Steve and my experience – both the good and the bad – and try to help improve the situation for other people dealing with MND. I have lost count of the number of times that people have said 'we need help co-ordinating all of the services that we have to use'. Our group has worked hard to raise awareness of the need for MND Co-ordinator roles in the NHS and succeeded last year in getting a one-year post in place locally which, although not a fully-fledged Co-ordinator, started to fulfil an element of this work. People living locally with MND have said what a huge difference this post has made to their lives…now the work continues to retain and develop the post, and prove its worth to other areas across the country where this role is not yet in place.
One of the toughest parts about being a carer for someone with MND knows that, at the moment, MND will at some stage take them away. You have to care for yourself so that you can continue to live on after that happens. The whole experience of life with MND, including the way in which the Health and Social Care system does or doesn’t support you, can leave a legacy on how you are able to pick yourself up and carry on. The more difficult the experience is, and the more exhausting the battles for good care are, the harder it can be. I will continue to campaign for greater application of common-sense in organising care for people living with MND, giving them the independence of choice that everyone deserves, and greater care for carers, finding support when and after the desperate life changing event happens.
How you can help
We're now only a few weeks away from the general election, which means there's only a limited time left to influence your parliamentary candidates and ask them to commit to working with us on this important issue. Please help by sending your candidates an email and asking them to sign our MND Charter.
If you have more time to give, please attend a local hustings event. Hustings provide an opportunity to talk to candidates about MND and the issues affecting people locally. One of the candidates at your local hustings will be your next MP. The aim is to have as many MPs in Parliament who know about MND and the challenges people face. Please read our handy hustings guide for tips on making the most of question and answer sessions with your local candidates.
For more information about our campaign on access to communication equipment for people living with MND please visit www.mndassociation.org/voice
