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MND Case Study

MND Case Study. Barbara Furnival Clinical Lead for Respiratory Physiotherapy WHH NHS Foundation Trust. Referral. GP referred Ian to our team in October 1998. Diagnosis was a 54yr old male with MND and chest infection. On Riluzole, Imdur, Aspirin & GTN. Difficulty with expectoration.

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MND Case Study

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  1. MND Case Study Barbara Furnival Clinical Lead for Respiratory Physiotherapy WHH NHS Foundation Trust

  2. Referral. • GP referred Ian to our team in October 1998. • Diagnosis was a 54yr old male with MND and chest infection. • On Riluzole, Imdur, Aspirin & GTN. • Difficulty with expectoration. • Expected prognosis of around 3 months.

  3. Team Assessment. • Ian presented as a tetraplegic patient. • There was no significant bulbar involvement. • He had a weak cough and was becoming distressed by his retained secretions. • He lived alone but had a good team of agency carers and a very caring family.

  4. Main Problems. • Weak cough and retained secretions. • Choking sensation. • Decreased appetite and poor fluid intake. • Difficulty in breathing whilst lying down. • Panic.

  5. Treatment Plan. • To increase humidification using saline & ventolin nebulisation and to encourage fluids. (Ian had no problems with his swallowing) • To aid secretion removal using modified postural drainage, abdominal thrusts to supplement his weak cough. Trial of an IPPB, BIRD device. (Intermittent positive pressure breathing device).

  6. Outcome. • Ian dramatically deteriorated in January 1999. • He was hospitalised with a diagnosis of pneumonia. • He had a mini-tracheostomy performed. • He was discharged after his family and senior carers were trained in suction technique.

  7. Social services reluctantly provided extra care and the MND society topped his care up to provide 24 hour cover. • In July 1999 Ian attended a Respiratory workshop to share his experience of care under the RRRT. • Ian had to be suctioned several times at this event, and he provided a taped message for the audience to hear.

  8. Initiation of NIV • In September 1999, Ian was struggling to trigger the BIRD as his respiratory effort was deteriorating. • Physician from Aintree came to see Ian at home at our request. The team performed his ABGs and overnight oximetry at home for this visit. • NIV and oxygen therapy were commenced. • His carers now looked after his NIV, oxygen, nebuliser and had to don/dof his interface.

  9. There was a period of reduced input from the RRRT. We visited every 2 weeks to change his mini-trache and check his NIV system. • Ian had a period of improvement whereby he gained some use in his right hand and muscle flicker in his thighs. • The neurologist from Walton neuro centre came to see Ian at home to assess this change in his condition.

  10. Ian became a grandfather, which gave him immense joy and he witnessed Molly’s first birthday. • Ian’s appetite became legendary, he was famous for his daily serving of fish and chips and sausage dinners. • His carers were doing a valiant job of HDU care in his bedroom.

  11. Stage of Deterioration. • Ian became more and more dependant on his NIV until he had it on 24/7. • His carers described marathon suction sessions of more than 30 mins at a time. • He was re-visited by the Aintree physician at our request. • Heated humidification was arranged and carbocisteine. • Ian was advised to diet as his large abdomen was compromising his ventilation.

  12. End Stage. • The team were visiting almost daily during December 2001 and January 2002. • Carers were expressing fear of looking after Ian now. • GP involved bank staff nurses, who had ICU skills. • Ian asked for his machine to be taken off. • GP attended after this request.

  13. Death. • The GP initiated palliative IM medication in February 2002. • Ian had 2 doses in that first afternoon. • He died that same early evening with his NIV still on whilst his family, GP and team members were present.

  14. Issues Raised • Let’s compare these 2 models of care. What are the good and bad examples of practice ? • What are the barriers for this level of intervention in your area? • What issues are raised regarding the burden of care for carers? • What issues are raised with regard to end of life? • What level of skill mix is available in your area to deliver this type of care plan? (Hospice/Nursing home/Respite etc)

  15. Issues • What are the barriers to delivering innovative respiratory care for people with MND? • Discuss training issues, NIV/Cough Assist/Respiratory Assessment, network contacts in your area for specialist advice. • What does this prompt you to change in your area of work?

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