Parliamentary reception highlights need for better social care for people with MND

Forty-one MSPs joined a parliamentary reception to highlight the need for better social care for people with motor neuron disease (MND) at the Garden Lobby of the Scottish Parliament on Tuesday, 16 April. 

The event was hosted by Bob Doris MSP with attendees hearing from the Minister for Social Care, Mental Wellbeing and Sport, Maree Todd, and Brian Murphy, who was diagnosed with MND in 2019. MND Scotland’s CEO, Rachel Maitland, also highlighted the importance of people with MND getting the care that they need.  

Guests, including 50 people directly impacted by MND, were joined by members of MND Scotland’s Board of Trustees.  

Maree Todd, the Minister for Social Care, Mental Wellbeing and Sport, addressed the reception and shared an insight into the National Care Service Bill, which was introduced in 2022 but will not be operational until 2029. 

Brian Murphy from Glasgow, who was diagnosed with MND at the age of 47, shared his very personal experience of living with the disease and how he wants support to be improved. In early 2023, Brian spent 108 days in hospital waiting for care to be put in place as social workers felt his case was too complex and that a care home was the only option.

Brian, and his wife Gillian, fought for the right to be cared for at home. Brian’s impactful speech highlighted the need for change.

Brian Murphy said: “Shouldn’t all of us with this terrible illness be able to be cared for at home if that’s what we want?

“24-hour care at home is not readily available but is so essential and is something I believe MND Scotland should be campaigning strongly for.

“Nobody wants to stay in hospital longer than necessary, but time is even more precious with a terminal illness, and it shouldn’t be a protracted fight to get a basic human right.

“My one wish from this is that my struggle sets a precedent and anyone in my position in the future automatically gets access to the care they need at home.”

Talking about the National Care Service Bill, Maree Todd, the Minister for Social Care, Mental Wellbeing and Sport, said: “The proposals include establishing a National Care Service Charter, rights to breaks for carers, provisions to enact Anne’s Law, so that people who are in care homes have the right to be visited by their families.

“That was backed by a Scotland wide consultation led by the Scottish government and that is all great news, and shows that the Scottish Parliament, cross party, recognises that we need long-term, widespread transformation to fix some of the ingrained issues that are within the system and to ensure sustainability for the future.

“This is our chance to reform social care for the better. We know that the current system isn’t working, and we have heard from more than a thousand people who are telling us the same. Being here allows me to share some of the details about progress on National Care Service (NCS) work in recent months and explain how it will be shaped in the future and how it can benefit people who are affected by MND and their carers.

“So, as you know, there was an expert legislative advisory group that has been established, and I’m delighted that MND Scotland have agreed to be a member of that group. That guarantees the focus is on people with lived experience and puts stakeholders right at the centre of our work. And that’s a good way to supplement the engagement that is already underway. That group will help to make sure that the stage 2 proposals are comprehensive and robust. It is really important we take time to work through those recommendations thoroughly. I am eager for pace and eager for change. I know that we are building something for the future that will last for generations to come, just as our NHS has lasted 75 years. I fully expect our National Care Service to evolve to the needs of the population of the future in exactly the same way – we are building something lasting.

“People have told us about the inequality and inconsistency of community health and social care support right across Scotland and we’ll ensure that the design and the delivery of the NCS has human rights embedded throughout. We’re committed to co-designing the NCS in partnership with stakeholders and experts, people with lived experience of the service, people accessing care and support, those closest to them – the unpaid carers, the workforce, NHS management, the clinical staff, the local government, and other key partners. It is about working with everyone who will be affected by the changes. It is a collaborative design in services – that includes organisations like MND Scotland.”

Rachel Maitland, MND Scotland’s Chief Executive, said: “I welcome the support of everyone that attended the reception to hear more about the devastating impact of this brutal disease. Sadly, Brian is not alone in having experienced serious problems with securing the social care he needed.

“People affected by MND need a social care system which is fast enough, and flexible enough, to cope with changing needs as the disease progresses. We will not see the National Care Service operational until 2029.  In the next five years, hundreds of people in Scotland will have been newly diagnosed with MND and died from the illness.  We cannot wait for a National Care Service. Change is needed now.”