Maria

This case study is an example of specialist knowledge and intervention by Tania Burge, Bristol.

Maria was 46 years old and was diagnosed with MS in 2002. Her MS progressed rapidly, leaving her with no movement in her body and poor speech and swallowing. Maria lived alone in a fully adapted house, with twenty-two hours of care a day. 

• Inability to swallow or cough effectively causes food and fluid entering her lungs (aspiration), resulting in  repeated admissions with chest infections (70 days in hospital over the past five years).
• Extreme tightness and muscle spasms, resulting in deformity, pain, and pressure ulcers.
• Neuropathic pain caused by MS damage to the sensory nerves, resulting in very uncomfortable sensations, such as intense burning or sharp, stabbing pain.
• Unwilling to discuss palliative care as Maria believed this would give the message that she didn’t want to live. She perceived interventions like a feeding tube (PEG) to eat and drink as a ‘downward step’, even though it could reduce aspiration and potentially improve quality of life. 

• After initially establishing trust between the AMSC and Maria, the AMSC convinced Maria to have a feeding tube and a catheter fitted to improve her quality of life and sleep.
• The AMSC supported Maria's GP to provide medications that will ease spasticity without causing muscle weakness or fatigue.
• Their trusting relationship enables them to discuss end-of-life care. Maria has now made an advanced directive, with AMSC Tania acting as her advocate at future meetings.

• Maria could be at the centre of her own care, working together with her AMSC as joint experts in her MS.
• Maria’s pain & spasticity drugs were properly monitored to minimise unwanted side effects.
• Introduction of PEG improved nutrition and hydration and reduced risk of respiratory infection and emergency admissions.
• Improved sleep, thanks to fitting of catheter.
• Maria felt able to discuss end of life, and has made an advanced directive.