A CAMPAIGNER with motor neurone disease (MND) has launched a battle to protect a round-the-clock care service that saved his life.
Father-of-two Euan MacDonald is among a string of patients affected by cutbacks to a project which looks after people who rely on ventilators to breathe and will no longer provide expert nurses after 5pm.
Mr MacDonald, who was diagnosed with MND at the age of 29 and helped establish an MND research centre at Edinburgh University, said the service had saved his life.
He said he was “very apprehensive” about the changes to the Home Ventilation Service, which is based at the Western General in Edinburgh and raised concerns that if he runs into breathing problems now he was more likely to be admitted to hospital.
“It has really been the NHS at it’s best,” he said.
“I owe my life to the service and I hope people in the future will be able to benefit from the level of support I have had.”
Nearly 300 patients are cared for by the service and around a fifth have MND.
“I was diagnosed with MND in 2003 and have used ventilation since 2009,” said Mr MacDonald. “The home ventilation service has kept me and others out of hospital and in our homes. It has dealt with routine and emergency situations alike and left me able to live safely in the community.”
When he first had a tracheostomy, when a tube is inserted through an opening in the neck so the windpipe can be directly connected to an oxygen supply, Mr MacDonald encountered complications. He describes sudden and severe breathing difficulties which were “terrifying”.
“Having someone on the phone who was able to immediately tackle the situation was crucial,” he said. “All of the home ventilation nurses knew me, my general state of health and the set up at my house - the equipment, medication available, my family and care situation, my moving and handling requirements and the transport issues I had.”
He remembers the tube blocking one Saturday and rising panic as his oxygen levels fell. One of the specialist home ventilation nurses talked his carer and wife through a number of steps to keep him calm and ventilated, then came round to solve the blockage.
Mr MacDonald, a former investment banker in his forties, said: “Right now if that happened the only way I could see a specialist would be to go into hospital.”
He is calling for a rethink of the shake-up, noting Health Secretary Shona Robison and the Scottish Government have stressed their aim is to allow people to remain at homes for as long as possible and avoid trips to hospital.
It is understood NHS Lothian will provide an alternative direct dial service at the Western General for patients requiring help breathing.
Dr David Farquharson, medical director of NHS Lothian, said: “We recently carried out a review of the service to ensure that our staff are providing the most efficient and best quality of care to our patients. The review found that most of our overnight calls related to issues with equipment which could safely be dealt with by telephone or managed in hours. Subsequent improvements in our equipment management have resulted in even fewer calls to the helpline overnight.”
When patients had an urgent medical problem that could not wait until morning, he said, they should contact their GP or call for an ambulance.
He added that all patients dependent on ventilators were given a backup in case of equipment failure. “Carers, friends and relatives are provided with extensive training on the upkeep and use of this equipment,” he said. “Patient safety is paramount and we believe that these changes will result in a safer service for all our patients.”
Craig Stockton, chief executive officer of MND Scotland, said the charity was aware of changes and was working closely with staff to ensure that patients with MND could continue to access the service.
He continued: “There is a need to look at how these services are provided nationally and to this end, in the coming months, we will be working with respiratory doctors and nurses across Scotland to establish best practice guidelines for ventilation support for people with MND.”
Why are you making commenting on The Herald only available to subscribers?
It should have been a safe space for informed debate, somewhere for readers to discuss issues around the biggest stories of the day, but all too often the below the line comments on most websites have become bogged down by off-topic discussions and abuse.
heraldscotland.com is tackling this problem by allowing only subscribers to comment.
We are doing this to improve the experience for our loyal readers and we believe it will reduce the ability of trolls and troublemakers, who occasionally find their way onto our site, to abuse our journalists and readers. We also hope it will help the comments section fulfil its promise as a part of Scotland's conversation with itself.
We are lucky at The Herald. We are read by an informed, educated readership who can add their knowledge and insights to our stories.
That is invaluable.
We are making the subscriber-only change to support our valued readers, who tell us they don't want the site cluttered up with irrelevant comments, untruths and abuse.
In the past, the journalist’s job was to collect and distribute information to the audience. Technology means that readers can shape a discussion. We look forward to hearing from you on heraldscotland.com
Comments & Moderation
Readers’ comments: You are personally liable for the content of any comments you upload to this website, so please act responsibly. We do not pre-moderate or monitor readers’ comments appearing on our websites, but we do post-moderate in response to complaints we receive or otherwise when a potential problem comes to our attention. You can make a complaint by using the ‘report this post’ link . We may then apply our discretion under the user terms to amend or delete comments.
Post moderation is undertaken full-time 9am-6pm on weekdays, and on a part-time basis outwith those hours.
Read the rules hereComments are closed on this article