Living with a terminal illness in prison

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1 Living with a terminal illness in prison Living with a terminal illness while in prison shouldn t mean that you won t be well cared for. You ll still have a choice when it comes to how you re cared for and prison healthcare staff must be aware of your wishes at every stage. Prisoners are entitled to the same medical care as other members of the public. This fact sheet includes information about: care in prison people involved in your care where you will be cared for if you re unhappy with your care dying in prison support for family and friends useful organisations how we can help Contact details for the organisations listed in this fact sheet can be found on pages 5-6. Care in prison If you re ill, you may be worried about many things including how you re cared for and where, staying in touch with your family or having your last wishes carried out. Everyone is entitled to be cared for to a good standard, whether in prison or not. If you re a prisoner, the NHS (South Eastern Health and Social Care Trust in Northern Ireland) is responsible for your health and must provide you with a good standard of care. There are six main things to know: 1. Open, honest communication should happen with healthcare staff about your needs and wishes as you near the end of your life. 2. A care plan should be made taking into account your needs and wishes.

2 3. Every service provider involved in your care must communicate with each other so that your care is coordinated. This includes prison officers and your healthcare team. 4. Your care has to be of a high standard no matter where it s happening. 5. Prison healthcare staff should be aware of your condition, including when you could die. They also need to consider your emotional and physical needs. Prisoners that you re close to, or caring for you, should be given support where possible. 6. Your family and other prisoners will be told when you have died. They should also get help coping with their feelings. People involved in your care Lots of people can help with your care in prison. Along with friends and family on the outside, prison staff, other prisoners and your healthcare team can all be sources of support. The prison chaplain may be able to offer spiritual counselling while a family liaison officer can make sure that your family knows about your treatment and offer them support. Your healthcare team will be able to tell you more about your illness and what s involved in your treatment. Marie Curie also has information about palliative care and end of life care. Call the Marie Curie Support Line on * for more information. It s important that you tell prison officers and your healthcare team your wishes so that they can support you. Offender supervisors can also play a part in deciding where and how you re cared for so it can be worthwhile to make contact with them. Where you will be cared for Where you re cared for will depend on the type of care you need and some other things like: where you d like to be cared for your security and the security of others your security status health facilities in the prison or local community if you can be granted compassionate release to die outside of prison The main thing is that you get the right type of care and your symptoms are managed well. With your permission, the prison healthcare team will share information about your health needs with any other services involved in your care. 2

3 Care on the wing Some prisoners feel more comfortable in their own cell and may prefer to be cared for there. The prison healthcare team can help with making this happen, if the prison service allows. It might also be possible for a fellow prisoner or prisoners to help with your care. If there s a prisoner carer scheme, the prison may be able to pay another prisoner to act as a carer. The prison inpatient unit or end of life unit These units often work with specialist palliative nurses and doctors who can visit you and give advice on controlling your symptoms. In hospital If the prison doesn t have an inpatient unit you may be able to go to a local hospital. Hospitals will have teams that can care for you and offer emotional support as well as help controlling your symptoms. At a hospice Hospices specialise in caring for people living with a terminal illness. As well as managing symptoms, they can offer counselling and complementary therapies to make you more comfortable. Marie Curie runs hospices across the UK that may be able to help. At home If you would prefer to be cared for at home before you die and have someone to care for you there, you can apply for compassionate release. This is usually made when somebody is in the last three months of life. Release is not often granted and you ll need to show a very low risk of offending. If you re turned down, you might be able to apply again if you become more unwell. To make an application for compassionate release on medical grounds a form will need to be completed by those familiar with your case including the prison governor, your medical officer, a probation officer and the medical director. If your application is turned down, you can get advice from an outside organisation or your solicitor. If you don t have a solicitor, you can find one in the Yellow Pages in the prison library or by getting a friend or family member to contact the Law Society. 3

4 If you re unhappy with your care Scotland and England If for any reason you re unhappy with how you re being cared for, you can complain to the NHS in England and Scotland using the NHS complaints procedure: 1. Try having an informal chat about what s bothering you with the person or team involved first. If you don t feel like this will work, you may need to make a formal complaint. You can do this in Scotland by contacting your local NHS Board on In England, you can contact NHS England on or write to: Complaints Manager, NHS England, PO Box 16738, Redditch, B97 9PT. 2. If you re not happy with the outcome of your complaint, you can contact the Parliamentary and Health Service Ombudsman (England) or the Scottish Public Services Ombudsman. Wales In Wales, your local Community Health Council can help with complaints and can be reached on Northern Ireland In Northern Ireland, the South Eastern Health and Social Care Trust is responsible for prisoner healthcare and can be reached on or by using a complaint form from the prison. You might also consider getting in touch with your local Citizens Advice Bureau or going to one of its advice sessions in your prison if available and CAB staff are allowed to visit the wing. Prison staff should be able to let you know. Dying in prison When someone dies in prison or in custody, the coroner will confirm the cause of death. The Prison and Probation Ombudsman (England and Wales), Northern Ireland Prisoner Ombudsman or Scottish Public Services Ombudsman may also investigate. After this, the death is registered and funeral arrangements can be made. After someone dies, the family liaison officer will be involved in letting the family know, if they re not already aware. If the person dies in a hospital or hospice, then prison escort staff, the family liaison officer and duty governor will work together to let the family know. 4

5 After the next of kin have been told, prison staff and other prisoners will be informed. Support for family and friends Family and friends may need support after a death. Everyone grieves in their own way and it can be an emotional time for those left behind. They may have to deal with practical matters like planning a funeral so it may help to plan for these things in advance. Our Information for bereaved family and friends section offers more support. Your friends in prison may also need help with their feelings. They can speak to prison officers, listeners or one of the healthcare staff about this. The chaplain may be able to offer counselling or put them in touch with someone who can. Sometimes the chaplain may be able to organise a memorial service for fellow prisoners. If you would like to send this information to somebody in prison, the a Prisoner is available for a small fee. Please make sure that this service is available at the prison you want to contact. Useful organisations Citizens Advice (Welsh) adviceguide.org.uk Find for your nearest bureau, or get legal information and advice on the website. Healthwatch (England) healthwatch.co.uk Contact for healthcare consumer advice. Prisoners Advice Service prisonersadvice.org.uk An independent legal charity that represents prisoners and provides advice. Prison Reform Trust prisonreformtrust.org.uk A charity that works to improve treatment and conditions for prisoners and their families. Recoop

6 recoop.org.uk Support for older prisoners and former prisoners. Samaritans samaritans.org Provides confidential non-judgemental emotional support 24 hours a day by telephone, or letter. The Prison and Probation Ombudsman (England and Wales) ppo.gov.uk The Prison Ombudsman for Northern Ireland niprisonerombudsman.com The Scottish Public Services Ombudsman spso.org.uk How we can help We help everyone affected by a terminal illness get the information and support they need, whether you have an illness yourself or you re a family member or friend. Marie Curie Support Line * Ask questions and find support. Open 9am to 5pm Monday to Friday. (Your call may be recorded for training and monitoring purposes.) *Calls from landlines are free, but there may be a charge if you re calling from a mobile. Check with your mobile provider for details. Calls from any type of phone will be free from 1 July Marie Curie Community community.mariecurie.org.uk For anyone affected by terminal illness to share experiences and support each other. Available 24 hours a day. 6

7 More information and further support We also have an extensive range of information materials available to view online or in print. Visit mariecurie.org.uk/help where you can also find film guides, information about our services, and links to further support. Marie Curie Nurses Marie Curie Nurses work night and day, in people s homes across the UK, providing hands-on care and vital emotional support. If you re living with a terminal illness, they can help you stay surrounded by the people you care about most, in the place where you re most comfortable. mariecurie.org.uk/nurses Marie Curie Hospices Our hospices offer the reassurance of specialist care and support, in a friendly, welcoming environment, for people living with a terminal illness and their loved ones whether you re staying in the hospice, or just coming in for the day. mariecurie.org.uk/hospices Marie Curie Helper We know the little things can make a big difference when you re living with a terminal illness. That s where our trained Helper volunteers come in. They can visit you regularly to have a chat to over a cup of tea, help you get to an appointment or just listen when you need a friendly ear. mariecurie.org.uk/helper Did you find this information useful? If you have any feedback about the information in this leaflet, please us at or call the Marie Curie Support Line on *. This fact sheet was produced by Marie Curie s Information and Support team. It has been reviewed by health and social care professionals and people affected by terminal illness. If you d like the list of sources used to create this information, please or call the Marie Curie Support Line on *. 7

8 Notice The information in this publication is provided for the benefit and personal use of people with a terminal illness, their families and carers. This information is provided as general guidance for information purposes only. It should not be considered as medical or clinical advice, or used as a substitute for personalised or specific advice from a qualified medical practitioner. In respect of legal, financial or other matters covered by this information, you should consider seeking specific professional advice about your personal circumstances from a qualified and regulated practitioner; Marie Curie does not provide legal, financial or investment advice or services. While we try to ensure that this information is accurate, we do not accept any liability arising from its use. Please refer to our website for our full terms and conditions. Marie Curie. April Edition 1. Next planned review All rights reserved. 8

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