Families for the Treatment of Hereditary MND (FaTHoM)

Scientists from the University of Oxford have set up ‘Families for the Treatment of Hereditary MND’ (FaTHoM), an initiative to bring together the community of families affected by inherited forms of MND. Their first meeting will take place in Oxford on Tuesday 18th April.

Most people living with MND cannot identify a relative who has also had the condition. However, around 5% of people with MND will have a family history of the disease, which is known as inherited or familial MND. This happens when a single faulty gene is passed down from parents to their children across number of generations.

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Recognising and supporting the role of informal carers

The symposium session ‘Carer and Family Support’ provided a platform to better understand the role that informal carers play in the lives of people with MND and discussed ways that we can improve support to carers.

Having a session dedicated to carers acts as a global recognition of the vital role that they play in the everyday lives of people with MND. It also emphasizes that we need to understand and explore the challenges that carers face in order to support them.

The role of a carer
Carers of people with MND will inevitably face additional challenges and stresses. They are often thrown into their caring role, with little time to think about what it involves or how to seek help and support and many will not recognise or be reluctant to be recognised as a ‘carer’. They will be coping with the unpredictability of the disease, often rapid changes, as well as knowing that the person they care for will die.

It is clear that carers play a central and vital role in the journey of a person with MND and therefore should be able to be involved in all decisions from the beginning. Although many of the needs of the person with MND and their carer will be overlapping, as the disease progresses and the burden of care increases there needs to be a heightened awareness and recognition of the specific needs of the carer.

We spoke to Dr Chris McDermott about his talk in the carer’s session before the symposium to find out what his findings really mean to people affected by MND.

Dr Chris McDermott presents carer findings at the symposium
Presenting his recent carer study findings at this session was MND Association funded researcher, Dr Chris McDermott from University of Sheffield.

Dr McDermott told us that “It is well recognised that there is a strong association between carer well being and the well being of people living with MND. It is therefore important to support those in a caring role. We are keen to understand the needs of individuals caring for people living with MND.”

Dr McDermott told us that he’ll be discussing his group’s latest findings at the symposium on the experiences of informal carers of people with MND, and will be recommending how support for carers could be enhanced.

Speaking to us before the symposium, he summarized his group’s findings: “Our findings have highlighted the need for not only emotional support, but also the physical impact of caring for a patient with MND to be recognised; the importance of services co-ordinating their input, particularly in the early stages following diagnosis in order to avoid adverse impact on patient and carer lives; the considerable challenge for many carers in having time away from the patient and accepting professional services, which needs to be overcome if respite or care services are to be taken up; and the challenge of providing equipment at the optimum time. Having identified these key needs of carers we can begin to develop changes to services and interventions to meet these needs.”

How we’re supporting carers
In January 2012, the MND Association introduced its Carer’s strategy. The strategy forms the basis of our commitment to carers of people with MND and provides the focus and direction required in order to meet our mission and values as outlines in our Strategic Framework: A world free of MND.

The MND Association undertook a carer’s survey in 2011 that resulted in the following statistics:

  • 75% of carers are female
  • 70% care for over 50 hours a week
  • 60% are over the age of 60
  • only 19% get planned regular breaks
  • 40% are concerned with loss of earnings.

Through the implementation of its strategy throughout 2012 and in the future, the MND Association has begun to develop carer specific support groups throughout the regions in England. We are currently looking at developing our information provision for young carers and this will be developed in 2013. October 2011 saw the launch of our Carers pack, available through the Care Information team, and by June 2012, 1,200 of these had been circulated. The MND Association continues to offer respite break funding for carers, through the implementation of its Financial Support criteria.

On a wider scale, the Association continues to raise awareness with politicians and statutory services about the needs of carers of people with MND specifically but not limited to carer’s assessments and rights, out of hour’s services and end of life issues.

Information for carers

Our International Symposium website news stories:

International Symposium closes in Chicago

International Symposium focuses on clinical trials

International Symposium focuses on carer and family support

International Symposium begins in Chicago

Researchers unite at our International Symposium on MND

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