PL is a gentleman in his 60’s who, following a car accident over 25 years ago, sustained a traumatic spinal cord injury resulting in C4 tetraplegia. He is unable to move or feel any sensation in his limbs or torso from his shoulders down, apart from slight movement in his right hand, which enables him to use his powerchair independently. He is confined to chair or bed. He has Type 2 diabetes managed with good diet, tablets, and insulin. He has chronic shoulder pain managed with surgical intervention, nerve blocks and medication. PL is dependent on others to maintain his safety and support with activities of living.
PL has 2 children, his daughter lives in Australia and his son in a nearby town and is grandad to 4 grandchildren. PL lives alone in his own house with his chihuahua and 24-hour support.
Clinical and operational challenges
PL was supported by a previous care provider; the relationship had broken down. We were approached in 2014 to provide support. We met with PL to discuss his priorities and wishes: he told us:
He wanted to be ‘in control’ with his life and household management
He wanted support workers who could communicate effectively with him and would listen to and respond to his requests, people he had something in common with and could trust
He wanted support workers to support him to care for his dog – ‘he is more than a pet, he is my best friend’
He wanted support workers who could drive his vehicle, to stop him being ‘a caged animal’ – so he could go out when he chose, not when the care provider could supply a driver
He wanted to be able to go on holiday with his support workers
He wanted support workers skilled and confident in meeting his clinical needs
We utilised the BHSC model of care and involved PL every step of the way
1. Recruitment – shortlisting drivers with the flexibility to accompany PL on holidays in the UK and overseas, PL interviewed them after we had ensured they met BHSC recruitment criteria
2. Training – we planned training around PL’s clinical and social needs and together we developed a robust care plan
3. Team leader – PL appointed a team leader within the support team to support him to manage his team in house
4. BHSC support team – RCM and CNS initially made weekly visits to support the newly created team, RCM to support team leader with rota planning and operational support, CNS to provide clinical training and assess clinical competencies.
PL was aware the quality of his future is a partnership between him and the support team. PL prefers to stay at home if he is unwell if admitted to hospital BHSC arranged for his team to continue support under the supervision of the ward staff
PL has stated ‘we have given him his life back’. It was a challenge initially until PL gained our trust. He is now leading a high-profile national campaign, has been on several holidays including 2 cruises and is back in control with household management