Thursday 24th May 2012
Gill Scott, Macmillan Prison Project Lead, is working to provide good palliative and end-of-life care to inmates.
Two hundred people died in custody in England and Wales during 2010–11, with 61% dying from natural causes. This figure is anticipated to grow due to an ageing population and longer sentencing.
A key challenge in the prison service is to provide equitable care and ensure timely access to appropriate services, within prison regimes. Both the infrastructure of the prison and its security category have a direct impact on how healthcare can be delivered to prisoners.
The challenges of providing quality palliative and end-of-life care in a prison setting are unique. Prisons have many competing priorities, such as a population that is much more likely to be affected by mental illness, personality disorders, learning disabilities and substance misuse than the general population. Therefore, improving palliative and end-of-life care may not be high on the agenda.
In addition, the number of prisoners requiring palliative and end-of-life care is relatively small, and maintaining staff confidence and competence in caring for this group is a challenge. Some prison officers may also find working with dying prisoners challenges their role and status. The officer’s duty of care towards these prisoners may require a tailored approach, which could conflict with personal beliefs and organisational culture.
Without clear policy and guidance there is potential for inconsistent decision-making and varying standards of practice.
Background to care
Historically, the North Durham Macmillan and Specialist Palliative Care team has provided services across four prisons in County Durham. Since 2005, the number of patient referrals to the Macmillan team and Macmillan palliative care consultant has increased. This increasing rate of referral – 30 patients over the last five years – led to good partnership working and a professional appreciation of the difficulties of caring for a person with palliative and end-oflife care needs in custody.
During 2007, the Macmillan team tried to implement the KITE (Keep Improving the Experience) standards into the prisons. This was largely unsuccessful as the standards, which are aimed at improving cancer and palliative care in general practice, did not fit well with the prison environment.
Offender healthcare prison project
In 2010, funding was secured from Macmillan, the North East Strategic Health Authority, and County Durham and Darlington NHS Foundation Trust, to deliver a one-year pilot project that would improve the standards of palliative and end-of-life care in the prison service.
Financial support has been secured for a second year from Macmillan and the North East Offender Health Commissioning Unit, with agreement from County Durham and Darlington NHS Foundation Trust to deliver the project across the regional cluster of seven prisons.
The project team consists of a Macmillan prison project lead and a Macmillan prison practice development nurse. The team works closely with clinical palliative care prison champions, who represent each of the seven prisons, and a discipline champion in HMP Frankland.
In collaboration with prison and palliative care professionals, the team have developed a service improvement tool called the Macmillan Adopted Prison Standards (MAPS). The tool provides a prison model for palliative and end-of-life care. It consists of 28 standards and associated measures that follow the offender’s healthcare pathway from entering the prison to release, transfer or dying in prison.
Development of MAPS was informed by national drivers including the End of Life Care Strategy. It was also influenced by a range of ombudsman reports and associated recommendations, which identified that communication, timely access to services and record keeping could be improved. Four of the prisons are currently working with MAPS.
Service users were also consulted in the development of MAPS through prisoner working groups in HMP Frankland. Many of the participants are serving lengthy sentences and acknowledged they will potentially require end-of-life care while in prison. Questionnaires relating to palliative and end-of-life care were also taken back to the residential wings by the group to gain a wider understanding of concerns and suggestions for service improvement.
Key themes from the working groups and questionnaires included worries about:
- contact with family outside of prison
- having equitable access to services
- choice, eg being able to stay in their own wing of the prison
- pain management
- mental health
- spiritual care
- receiving care with dignity and compassion
- what happens after death
- access to information, eg wanting booklets that answer their questions.
Information and education
The outcome of the working groups led to the development of patient information that addressed these concerns. Information included a leaflet about key workers and a DVD about end-of-life care in prison. The resources have also been used in educational sessions for prison officers, nursing staff and families.
The provision of education is a key strand of the project, to ensure staff are equipped with the knowledge and skills to provide quality generalist palliative and end-of-life care.
The project team work in partnership with Teesside University to deliver work-based education. To date, 25 staff, including prison officers, a chaplain and nurses have successfully completed the level four module – An introduction to Palliative Care for People with Cancer and Long-term Conditions. Three senior nurses have completed a key worker module at degree level, to support the introduction of a key worker for people in palliative care in HMP Frankland and HMP Durham.
Contact Specialist Macmillan Services on 019 1586 2426 or the Macmillan Support Line on 0808 808 00 00.
1. Alice Fuller. No bars to care. Inside palliative care. December 2011. Vol 18; pages 12–13.