FIGHTING
SUMMARY
NEIL HANNA
Jennifer Trueland reports on one man’s successful campaign to tackle a specific shortage of specialist nurses in Scotland
Awareness of motor neurone disease (MND) is rising, but many patients struggle to get the care they need. MND specialist nurses provide support and help people navigate the system. Gordon Aikman has campaigned successfully for funding to double the number of nurses in Scotland. Author Jennifer Trueland is a freelance journalist
Gordon Aikman says the nurse helping him cope with motor neurone disease is a ‘lifeline’. ‘She’s central to my care – she sorts out delays and bottlenecks, she speeds things up,’ he says. ‘People progress at different rates and their needs are changing all the time. It’s great to know someone is going on that journey with me, and that it’s someone who knows about the disease and what to expect.’ Awareness of motor neurone disease (MND) is rising. Last year’s ice bucket challenge – which involved people nominating each other to have ice cold buckets of water poured on their heads and promote donations to MND research – was a social media sensation. More recently, The Theory of Everything, an Oscar-winning film about Stephen Hawking, has also helped put the progressive neurological disease in the spotlight. But campaigners say there is still a long way to go before people with MND get the care they need – and that includes access to specialist nurses. Mr Aikman (pictured), from Edinburgh, is a former policy and communications adviser to the Labour Party. He was diagnosed with MND last year. Aged just 29, he is dedicating the time he has left to campaigning (see box). Life expectancy for many people with the disease is short – an average of 14 months following diagnosis, according to the charity MND Scotland.
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FOR MND SPECIALISTS More support for MND specialist nursing is one of the key demands of Gordon’s Fightback. In January, Scotland’s first minister Nicola Sturgeon announced £700,000 to fund the country’s current MND nurse specialists, and to double their number. There are eight MND nurses in Scotland, with some working part-time, and 80 per cent of the costs are covered by MND Scotland. ‘This is great news,’ says Mr Aikman. ‘I could do with seeing my nurse more often, but they have so many patients that too much time is spent behind the wheel of a car. ‘They should also be paid for from the public purse. Why should someone have to run a marathon so that I can die with dignity?’
Regional care
Carole Ferguson has been an MND specialist nurse for around 20 years. She is one of the regional care specialists for MND covering the west of Scotland. Driving to see some patients can be a five-hour round trip, while getting to the Western Isles involves a flight or ferry and often an overnight stay. Her role generally starts after a patient has been diagnosed. ‘Some people have already put two and two together. But for others it is a complete shock. ‘At that stage, we offer to do a home visit. We believe it’s better to see people at home, in their own environment. We are there to give aid and information, and to refer people on, for example to occupational therapy, and for benefits advice.’ It is best to organise aids and adaptations in the home as early as possible, she says, partly because they can take a long time to process, but also because the condition can progress rapidly.
‘We help people find their way through the system,’ Ms Ferguson says. ‘People have very different reactions – one lady was very calm and collected, and said she felt as if she was out of her own body, looking in. ‘One man told me the day he got a wheelchair was the “worst day ever”, but then when he needed help to breathe, the wheelchair seemed insignificant.’ MND is a terminal disease, and Ms Ferguson says she can do nothing to change that. ‘There’s a heap of research going on, but there isn’t a tablet just round the corner.’ She welcomed the ice bucket challenge and the Stephen Hawking film, but admits that the incredible life of Professor Hawking can give people the wrong idea. ‘People will often ask about Hawking, because he has lived with the disease for so long – but he is not a textbook case,’ she says. Ms Ferguson believes specialist nursing makes a difference to patients, including the 102 in her
Gordon’s campaign Gordon Aikman’s campaign (gordonsfightback. com) has five main points: Double MND research funding. Mr Aikman has called on the Scottish and UK governments to speed up the search for a cure. Fast-track benefits. Mr Aikman says it can take seven months to process applications for Personal Independence Payments, while average life expectancy after diagnosis is only 14 months. Outlaw care charges. Although personal care should be free in Scotland for people with terminal illness, Mr Aikman says some patients are being charged for things like help with dressing, washing and feeding themselves. Pay MND nurses from the public purse. This has been delivered for Scotland. Double the number of MND nurses. This has been delivered for Scotland. You can donate to the campaign at justgiving.com/gordonaikman
caseload, and is delighted that the number of specialists will shortly double in Scotland. ‘I’m a constant throughout the disease process,’ she says. ‘Others, such as occupational therapists, do a great job, but they come and go. Plus I have the specialist knowledge that comes with experience.’ It is important to be proactive, she says, and to respond quickly. ‘People cannot afford to wait.’ The MND Association, covering England, Wales and Northern Ireland, is looking at Scotland with some envy. ‘The campaigning work in Scotland by Gordon Aikman has been fantastic,’ says MND Association director of care Karen Pearce. ‘We can only hope for a similar approach soon here.’ The association says it is not possible to accurately state the number of MND nurses in the UK because they are employed by a range of organisations and have different responsibilities. Nevertheless, it believes more are needed. ‘We certainly believe these posts are valuable and recently campaigned successfully to have a community MND nurse reappointed in England,’ says Ms Pearce. She adds: ‘We know, because people with MND and healthcare professionals tell us, that a co-ordinated approach – which includes supporting access to care and equipment in a timely manner – is vital in achieving best quality of life.’ As for Mr Aikman, at the time of our interview he had raised £223,000 and, in his words, was ‘charging’ towards his £250,000 target. He continues to raise funds and campaign for those who are coming along behind him. ‘What he’s doing is stunning,’ says Ms Ferguson. ‘He is an amazing young man’ NS
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SUMMARY
NEIL HANNA
Jennifer Trueland reports on one man’s successful campaign to tackle a specific shortage of specialist nurses in Scotland
Awareness of motor neurone disease (MND) is rising, but many patients struggle to get the care they need. MND specialist nurses provide support and help people navigate the system. Gordon Aikman has campaigned successfully for funding to double the number of nurses in Scotland. Author Jennifer Trueland is a freelance journalist
Gordon Aikman says the nurse helping him cope with motor neurone disease is a ‘lifeline’. ‘She’s central to my care – she sorts out delays and bottlenecks, she speeds things up,’ he says. ‘People progress at different rates and their needs are changing all the time. It’s great to know someone is going on that journey with me, and that it’s someone who knows about the disease and what to expect.’ Awareness of motor neurone disease (MND) is rising. Last year’s ice bucket challenge – which involved people nominating each other to have ice cold buckets of water poured on their heads and promote donations to MND research – was a social media sensation. More recently, The Theory of Everything, an Oscar-winning film about Stephen Hawking, has also helped put the progressive neurological disease in the spotlight. But campaigners say there is still a long way to go before people with MND get the care they need – and that includes access to specialist nurses. Mr Aikman (pictured), from Edinburgh, is a former policy and communications adviser to the Labour Party. He was diagnosed with MND last year. Aged just 29, he is dedicating the time he has left to campaigning (see box). Life expectancy for many people with the disease is short – an average of 14 months following diagnosis, according to the charity MND Scotland.
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FOR MND SPECIALISTS More support for MND specialist nursing is one of the key demands of Gordon’s Fightback. In January, Scotland’s first minister Nicola Sturgeon announced £700,000 to fund the country’s current MND nurse specialists, and to double their number. There are eight MND nurses in Scotland, with some working part-time, and 80 per cent of the costs are covered by MND Scotland. ‘This is great news,’ says Mr Aikman. ‘I could do with seeing my nurse more often, but they have so many patients that too much time is spent behind the wheel of a car. ‘They should also be paid for from the public purse. Why should someone have to run a marathon so that I can die with dignity?’
Regional care
Carole Ferguson has been an MND specialist nurse for around 20 years. She is one of the regional care specialists for MND covering the west of Scotland. Driving to see some patients can be a five-hour round trip, while getting to the Western Isles involves a flight or ferry and often an overnight stay. Her role generally starts after a patient has been diagnosed. ‘Some people have already put two and two together. But for others it is a complete shock. ‘At that stage, we offer to do a home visit. We believe it’s better to see people at home, in their own environment. We are there to give aid and information, and to refer people on, for example to occupational therapy, and for benefits advice.’ It is best to organise aids and adaptations in the home as early as possible, she says, partly because they can take a long time to process, but also because the condition can progress rapidly.
‘We help people find their way through the system,’ Ms Ferguson says. ‘People have very different reactions – one lady was very calm and collected, and said she felt as if she was out of her own body, looking in. ‘One man told me the day he got a wheelchair was the “worst day ever”, but then when he needed help to breathe, the wheelchair seemed insignificant.’ MND is a terminal disease, and Ms Ferguson says she can do nothing to change that. ‘There’s a heap of research going on, but there isn’t a tablet just round the corner.’ She welcomed the ice bucket challenge and the Stephen Hawking film, but admits that the incredible life of Professor Hawking can give people the wrong idea. ‘People will often ask about Hawking, because he has lived with the disease for so long – but he is not a textbook case,’ she says. Ms Ferguson believes specialist nursing makes a difference to patients, including the 102 in her
Gordon’s campaign Gordon Aikman’s campaign (gordonsfightback. com) has five main points: Double MND research funding. Mr Aikman has called on the Scottish and UK governments to speed up the search for a cure. Fast-track benefits. Mr Aikman says it can take seven months to process applications for Personal Independence Payments, while average life expectancy after diagnosis is only 14 months. Outlaw care charges. Although personal care should be free in Scotland for people with terminal illness, Mr Aikman says some patients are being charged for things like help with dressing, washing and feeding themselves. Pay MND nurses from the public purse. This has been delivered for Scotland. Double the number of MND nurses. This has been delivered for Scotland. You can donate to the campaign at justgiving.com/gordonaikman
caseload, and is delighted that the number of specialists will shortly double in Scotland. ‘I’m a constant throughout the disease process,’ she says. ‘Others, such as occupational therapists, do a great job, but they come and go. Plus I have the specialist knowledge that comes with experience.’ It is important to be proactive, she says, and to respond quickly. ‘People cannot afford to wait.’ The MND Association, covering England, Wales and Northern Ireland, is looking at Scotland with some envy. ‘The campaigning work in Scotland by Gordon Aikman has been fantastic,’ says MND Association director of care Karen Pearce. ‘We can only hope for a similar approach soon here.’ The association says it is not possible to accurately state the number of MND nurses in the UK because they are employed by a range of organisations and have different responsibilities. Nevertheless, it believes more are needed. ‘We certainly believe these posts are valuable and recently campaigned successfully to have a community MND nurse reappointed in England,’ says Ms Pearce. She adds: ‘We know, because people with MND and healthcare professionals tell us, that a co-ordinated approach – which includes supporting access to care and equipment in a timely manner – is vital in achieving best quality of life.’ As for Mr Aikman, at the time of our interview he had raised £223,000 and, in his words, was ‘charging’ towards his £250,000 target. He continues to raise funds and campaign for those who are coming along behind him. ‘What he’s doing is stunning,’ says Ms Ferguson. ‘He is an amazing young man’ NS
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