Sue’s Story – Living with Motor Neurone Disease and being supported by Weldmar
21st June 2023
< BACK TO NEWSIt’s a common misconception that Weldmar only looks after patients who have cancer. Instead, Weldmar Hospicecare provides care for many life-limiting conditions, usually for people in their last year of life. Weldmar supports patients with Motor Neurone Disease (MND) from the point of diagnosis, such as with the services of a dedicated nurse and other specialists at a regular MND clinic. On Global MND Day, here’s how Weldmar has been making a difference to Sue and her family.
Sue, from Maiden Newton, was diagnosed with Motor Neurone Disease in December 2020, after a year feeling that things just weren’t right. Getting the diagnosis proved difficult, partly due to the pandemic but also because MND is a rare and very individual disease (GPs will often only see one or two cases in their working lifetime) and symptoms can be difficult to identify. This meant that by the time Sue was referred to Weldmar, she was feeling incredibly weak and unwell.
Not unsurprisingly, the news came as a shock. “My first thought was ‘how long do I have?'”, Sue told us, “and if I’m honest I thought that if I had three months, I would be lucky and so there felt like an urgent need to put my affairs in order.”
Sue says that being referred to Weldmar provided relief that they would be dealing with experts in the condition, which she says was confirmed when she met Rose Elliott who is a Specialist Nurse. “Where I had felt very much on my own, suddenly there was support there. Rose is incredibly knowledgeable and brought with her a kind, compassionate and empathetic approach. My daughter and I both have a nursing background and so Rose quickly recognised our desire to have open and honest discussions about what the future would bring. The wheels were in motion for the support I needed. This included an urgent appointment to commence NIV (a non-invasive ventilation machine) at night, without which I feel sure I wouldn’t be here now.”
Weldmar’s neurology nursing team – Charissa, Neurology Nurse, and Specialist Neurology Nurse Rose
Weldmar’s face-to-face MND clinic at their Inpatient Unit in Dorchester allows Sue to update the team on how she is and raise any concerns or issues she may have.
Sue says, “They are able to explain how things were going to go, what they can do to help me, and what I can do to help myself. It’s very hard, because you fear the worst, not knowing about MND yourself. With all the specialists around, it is calming, it is reassuring and I’m able to stop panicking as much. All the services are joined up – I was surprised Rose was able to talk to my GP for a start and arrange stronger painkillers or something like that, which would be sorted in just a day or two.”
All the different experts at Weldmar talk to each other. I feel that I don’t have to repeat myself, which is good because when I talk I don’t have a lot of breath. They come along, they’ve read what’s been happening. They work so well as a team.
Sue explains that the support of her occupational therapist at Weldmar, Charmaine, has been invaluable. “She has been endlessly patient with me as she tries to pre-empt my needs and balance my wish to be independent for as long as possible. A number of times I’ve said that I’m not ready for a certain piece of equipment, only for Charmaine to get a call from us a month or so later to say we now need it!”
As well as medical input, Sue has also met Jo, Weldmar’s Specialist Palliative Care Social Worker, spending many hours talking and gently working through Sue’s feelings and concerns. The complementary therapy team have supported Sue with reflexology and also provided sessions for her daughter and husband.
Sue explains that it’s also been really important to have support for her family. “It’s not just me suffering with Motor Neurone Disease. We’re all living it. They need as much support as I do.”
