Award winning Marnie Walker, Nurse Manager from St Anne’s Community Services, leads a team who support six people who have learning disabilities with complex health conditions. Care Talk caught up with Marnie and to find out about her approach when it comes to providing person centred, palliative care.
The structure of existing end of life packages, such as Gold Standard Framework (2004) have been fundamental in recognising that there is a need for a pathway when a person’s health deteriorates, and they reach end of life.
Following (GSF)accreditation we adapted and built on this model to meet the specific holistic needs of people with learning disabilities to help them live well, at their optimum health until they die, as their potentially life limiting conditions can be present at birth or soon after and can take a very unpredictable journey.
At St Anne’s Community Services our care plans are integrated at an early stage in an individual’s journey, as we believe that good end of life care starts with good health care. By utilising client and family involvement as well as professional input, we manage changes as the individual ages or their health deteriorates, as well as proactively predicting changes in their condition.
We improve the outcomes for the individual and their families by recognising the health needs of a person, liaising with specialist services, building support networks whilst anticipating changing needs to reduce hospital admissions and enable when possible to support the person in their preferred place to die.
With the Doing It My Way package, the care staff can develop their own specialist skills in-order to meet the needs of the individual in a person focused manner, thus providing continuity of care throughout different life stages.
The Doing It My Way: Probabilities of Life Expectancy (POLE) document is a tool designed by the team at St Anne’s Community Services, and is cited as good practice in ‘Delivering high quality end of life care for people who have a learning disability’ (NHS England)
It is used to; help you determine the stage of life the person is at, and what support they need from you or which other professionals you may have to involve in their care and enables us to anticipate and prepare as people’s needs change.
Our experience of working with people with learning disabilities us to identify these five key areas.
- Optimum Health;
- Congenital abnormalities that will affect life expectancy;
- Life threatening conditions that respond to treatment;
- Progression of disease which no longer responds to treatment;
- Caring at the end of life;
By implementing the advance care plan everyone feels empowered and more confident whilst supporting an individual at end of life. There has been a reduction in staff sickness as they feel better prepared and provided with support through team discussions and individual supervisions. Families are encouraged to be involved in ‘Doing It My Way’ and are included in the training DVD talking about their personal experiences. The ‘Doing It My Way’ pathway better prepares families to cope with their grief and loss after the loved one has died.
‘Doing it my way’ is not only a training and support package, it has been a transformational driver of change, it puts end of life care as priority, it allows services to embed the principles of excellent end of life care into everyday normal planning of care, and to be discussed as routine in person centred care planning and annual reviews. Training is important as it changes the culture of the organisation. It challenges values, attitudes and beliefs. It can make a real difference to the support that is given to the person and their family and friends. Doing It My Way has been an example of how individuals, from different organisations, with different skill sets can work together to support the person with learning disabilities and their families to achieve the best outcomes at end of life.