‘A Ball of Fire’: How Weldmar’s MND Nurse is coordinating care for Caroline

John describes Weldmar Hospicecare’s MND Nurse, Charissa, as a ‘ball of fire’.

‘She gets things done,” explains John, whose wife Caroline was diagnosed with MND (Motor Neurone Disease) a year ago. “We were referred to Weldmar, and never looked back. Charissa has been marvellous, and we’ve had so much support.”

Caroline had originally been diagnosed with Primary Progressive Aphasia due to difficulties with her speech, but after developing a number of other symptoms it was re-assessed as MND.

The couple’s daughter, Nikki, says it was a significant turning point: “It was a big relief to know there would be that support network when we were referred to Weldmar. They’ve dealt with it in such a compassionate, respectful way, and with so much care. It’s been amazing really. Charissa and the team know everything about MND, and you can ask them any questions about it.”

John says he’s particularly impressed with how Weldmar is at the central cog in a wide network of support for Caroline: “They’ve referred us to Southampton Hospital, who have provided equipment such as a ventilator. The tech team at Christchurch have also paid us a visit, and fixed up the computer with a marvellous large keyboard for Caroline to use. There’s also the speech therapy team in Poole, and with Weldmar at the centre, everyone knows what everyone else is doing.”

“Charissa has been amazing at coordinating everything,” agrees Nikki. “She works quite closely with Katie from the NHS frailty team in Shaftesbury and they have visited mum together. I might call the nutrition nurse and she’ll say ‘I spoke to Charissa this morning!’ She’s so good at keeping us all in the loop, which is really important.”

Charissa’s experience as Weldmar’s MND Nurse has been invaluable for the family. “It’s helpful having someone who you can talk to about any medical difficulties Caroline might be having,” says John. “We’ve had lots of conversations with Weldmar about a feeding tube for Caroline, and whether and when it might be a good idea. It was decided it would be better to do it sooner, and so she’s going into hospital for that next week.”

As well as the support from external agencies that have been on call, additional Weldmar services have also been involved with care for both Caroline and John, including occupational therapists and physiotherapists.

As Nikki explains, “They offer specialist knowledge of working with people with MND. Mum was given some hand exercises to do, and they’re very good at explaining things like the spasticity (the stiffening and tightening of muscles) in mum’s hands. They also can advise on what’s coming down the line, so we can feel prepared for the future.”

“Caroline only needs to mention a difficulty that she’s been having,” says John, “and then a piece of equipment will arrive to help solve that particular problem. One example was that Caroline was getting a bumpy ride as we tried to get the wheelchair over the step into the garden. They measured up, and the following week a ramp arrived. It’s all so efficient!”

Both Caroline and John have also had visits from Emma in Weldmar’s Complementary Therapy team, who has provided Reiki, reflexology, and massage. This helps both physical and mental wellness during what is a challenging experience for them both.

Nikki says that both she and John have also been well supported by Weldmar: “When Charissa visits, she’s asking mum about everything but also checking in with Dad. She’s always said that we can phone at any point if we want to chat anything through. I have called a couple of times and she’s always got time to talk and give support.”

“For me,” Nikki continues, “it’s been such a comfort to know it’s all there really. When it’s family you’re so involved emotionally, so it’s good to have someone who can ease those difficult conversations about things that are hard to think about.”

John says he’s very grateful for the support he gets, too. “Every time she rings, Charissa always asks how I am. She’s very aware it’s not just Caroline experiencing this. The help we’ve had from Weldmar has meant everything, really.

“We knew about Weldmar and the hospice building, but all this help and support and coordination we’ve had the benefit of here at home is a surprise – I had no idea that a hospice did all that. I’m very impressed – we’re very lucky to have it in Dorset.”

Our thanks to Caroline, John, and Nicky for sharing their story with us.

Sharing first hand experiences of Weldmar’s care helps people understand more about what we do and the difference that we can make. If you would be interested in sharing your Weldmar story, please contact james.oneill@weld-hospice.org.uk