Gordon Aikman Scholarship develops MND-specific Future Care Plan

Funding that honours the late motor neuron disease (MND) campaigner Gordon Aikman has delivered an MND-specific future care plan.  

The Aikman Future Care Plan was developed by Louise Gardiner, a MND clinical nurse specialist working for NHS Fife, who now hopes the care plan will be rolled out across the other Health Boards in Scotland.   

The Gordon Aikman Scholarship was set up in 2017, in honour of late MND campaigner Gordon Aikman, to fund research and developments into improving care and support for people living with MND.  

The £50,000 scholarship scheme is jointly funded by MND Scotland and the Scottish Government, each investing £25,000, and is for clinical researchers and healthcare workers in NHS Scotland or Scottish Higher Education Institutions to develop practical improvements in the way people with MND are cared for. Louise was awarded over £24,000 in 2022 to undertake her work.  

Future care planning, previously known as Advance Care Planning, is the process that provides people with an opportunity to discuss and plan their care preferences and wishes for their future. Louise Gardiner identified that existing care plans did not meet the multiple dimensions and high care needs of people living with MND. At the time of the project, there was no MND-specific plan available.  

People living with MND in Fife, as well as health professionals involved in MND care in Fife, were invited to contribute to the creation of the future care planning document. The same groups were also surveyed regarding the suitability of existing plans and how they could be adapted to suit the care needs of people living with MND.  

One main benefit identified from these discussions was the importance of, and need for, a document that ensured that treatments and interventions that are not wanted, or don’t benefit a patient, can be avoided during community treatment or hospital admission. It may also help health and social care professionals with their clinical decision making for each individual patient. 

The Aikman Future Care Plan covers the complex needs of people living with MND, providing an opportunity for them to discuss all dimensions of their future care should they wish to do so. It allows for discussion around wishes for treatment of a reversible cause of deterioration, what is important to them should they require a hospital admission, their wishes in terms of adapting their home for their future needs and their views on interventions such as gastrostomy feeding tubes and non-invasive ventilation. All of which have previously not been outlined in generic future care planning documents. 

This work has led to an education and implementation plan being produced, with the ultimate aim of educating health and social care professionals on the importance of giving people with MND the opportunity to discuss their future care and having the Aikman Future Care Plan being part of routine MND care in Fife.  

The Future Care Plan has been named after the late Gordon Aikman. Gordon was diagnosed with MND at the age of 29 and spent his final years campaigning for social reforms and nursing resources to improve the lives of people living with the disease, before he died at age 31. 

Louise has started to roll out the Aikman Future Care Plan document in Fife over the past few months, giving people with MND the opportunity to discuss their wishes and what matters to them.  

This is a promising step forward in MND-specific care and serves to empower people with MND and allow their wishes to be acknowledged.  

Louise hopes to work alongside her colleagues and the National MND Clinical Nurse Specialist team with the hope that the Aikman Future Care Plan can be made available to people with MND across the country by being integrated into MND care in all Scottish health boards.   

MND clinical nurse specialist, Louise Gardiner, said: “Helping people with MND explore their future care choices, wishes and preferences has been something I have always been passionate about as a nurse. I am privileged to work with patients and their families, and the Future Care Planning document has been developed alongside patients, carers, and the wider multi-disciplinary team in Fife. 

“People with MND have a wide range of health and social care professionals, as well as charities, supporting them so communication is key. The Aikman Future Care Plan gives people with MND the opportunity to discuss and plan their future health care and document their wishes in one place. I hope this project will ensure that people living with MND have a care plan that expresses their wishes, and what is most important to them, and that this information can be easily communicated to the full multi-disciplinary team. 

“I have named the document after Gordon Aikman as a fitting tribute to his legacy and I hope the Aikman Future Care Plan will be rolled out across the other Health Boards in Scotland. I am greatly appreciative to MND Scotland and the Scottish Government for allowing me to develop Future Care Planning through the Gordon Aikman Scholarship.” 

Dr Jane Haley, Director of Research at MND Scotland, said: “Louise’s care plan is exactly the sort of project that the Gordon Aikman Scholarship was designed to enable, and we hope it can be made available more widely in Scotland. She has delivered a well thought out and well-presented planning tool that provides a clear framework for enabling what can be difficult conversations, while making it easier for people with MND in Fife to express their future care wishes.”