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15th February 2017

Motor Neurone Disease and Social Care: Following a Shining Star

February in Wales is synonymous with the annual festival of rugby that is the Six-Nations competition. It is a time when the nation dreams but also remembers its current and past heroes, and those in the wider rugby community who have left their mark upon the national consciousness.

Joost van der Westhuizen was one such player, a giant within the world-game who won the world cup with South Africa in 1995. He was also the scourge of Welsh teams of the 1990’s. More recently he became famous for his battle against Motor Neurone Disease (MND) and his establishment of the J9 foundation in South Africa to support those diagnosed with the disease.

Motor Neurone Disease

The incidence of MND is around 2.5 per 100,000 and so, while fortunately it is not a common disease, it has a catastrophic impact upon those who are diagnosed. It is likely to present at first as a limb weakness and at this stage is often missed through being considered insignificant. However, it leads to gradual degeneration, wasting and ultimately death. While the NHS will take a lead with a consultant led multi-disciplinary team, social care can also be an essential component of the total care package.

Following the Social Services and Well-being (Wales) Act, 2014, anyone diagnosed with MND in Wales will be entitled to a social care assessment to identify any personal well-being and support needs. The exact nature of the support package will be determined by the assessment. A carer is now also entitled to a carer’s assessment to ensure all aspects of support have been considered.

Determinants of Well-being

I would like to consider a couple of features of the 2014 Well-being Act which might be pertinent to those diagnosed with MND.

Firstly, the Act recognises that a key determinant of well-being is the ability to support oneself financially and/or access available benefits and entitlements. Given that MND will impact upon an individual’s ability to continue working, it is important at an early stage that the financial impact of the disease is considered and planned for. Many individuals with life-limiting illnesses report an ability to cope with their disease so long as they are supported in maintaining key functions of living. Therefore, planning for financial security and an assessment of benefits and entitlements is a key task – it allows the individual to get on with giving meaning to life.

The 2014 Act also introduces the flexibility to receive direct-payments as opposed to receiving established services with a different focus. Care workers are often best placed to make a reality of this ‘personalised care’ mantra.

Care Worker’s Role

They will often have the highest level of contact with a person with MND, and according to the MND Association, their personalised role can encompass a whole range of activity such as;

  • Monitoring MND – including how it progresses and important markers to look out for;
  • Utilising good communication skills – a care worker should know how to communicate with, and understand the needs of, a person who may have lost or has difficulty with their speech;
  • Assisting moving and handling;
  • Ensuring safeguarding;
  • Providing dignity in care provision;
  • Recognising cognitive change and dementia;
  • Assisting with medication;
  • Helping a person who has a feeding tube;
  • Using an assisted ventilation machine and other equipment.

In the event of MND the flexibility of direct-payments is key to sourcing care and support which is truly bespoke and tailored to individual well-being.

In raising awareness internationally and establishing services in his native South Africa, Joost has fulfilled a remarkable mission. Whilst his achievements in sport were truly stellar, they were surely eclipsed by his humble and dignified response to MND.

For more information see; http://www.mndassociation.org/getting-support/health-and-social-care-services-for-mnd/

*All information is correct at the time of publishing

Nic Bowler

Welsh Care and Social Services Inspectorate Specialist

Dr Nicholas Bowler is a researcher and consultant to government-level [Welsh Government Review of Secure Services, 2009] – specialising in QA/compliance focused projects. He has interests in clinically relevant training, service development and research. He enjoys working with clients to support them in identifying problems and initiating projects to improve practice.

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