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.
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If you’re living with a terminal illness in prison, 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:
- Open, honest communication should happen with healthcare staff about your needs and wishes as you near the end of your life.
- A care plan should be made taking into account your needs and wishes.
- 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.
- Your care has to be of a high standard no matter where it’s happening.
- 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.
- Your family and other prisoners will be told when you have died. They should also get help coping with their feelings.
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 more information about palliative care and end of life care.
It’s important that you tell prison officers and your healthcare team your wishes so that they can support you. Internal and external 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’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.
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.
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.
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. The PSO 6000 Parole Manual (PDF) has more details.
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 check the Law Society’s search engine .
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:
- Make a complaint. 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, this NHS Inform factsheet (PDF) can help with this or you can call 0800 22 44 88. In England, you can contact NHS England on 0300 311 12233 or write to: Complaints Manager, NHS England, PO Box 16738, Redditch, B97 9PT.
- If you’re not happy with the outcome of your complaint, you can contact the Parliamentary and Health Service Ombudsman (England) on 0345 015 4033 or the Scottish Public Services Ombudsman on 0800 377 7330.
In Wales, your local Community Health Council can help with complaints and can be reached on 0845 644 7814*.
In Northern Ireland, the South Eastern Health and Social Care Trust is responsible for prisoner healthcare and can be reached on 028 9056 4815 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 a Citizens Advice Bureau advice session in your prison if one is available and CAB staff are allowed to visit the wing. Prison staff should be able to let you know.
Read more about making a complaint to the NHS.
When someone dies in prison or in custody, the coroner will confirm the cause of death. The Prison and Probation Ombudsman (England and Wales, 0845 010 7938*), Northern Ireland Prisoner Ombudsman (028 9052 7752) or Scottish Public Services Ombudsman (0800 377 7330) 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.
After the next of kin have been told, prison staff and other prisoners will be informed.
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 Email a Prisoner service is available for a small fee. Please make sure that this service is available at the prison you want to contact.
This content is provided for general information purposes only. It's not medical, financial, legal or personal advice. We suggest that you consult with a qualified professional about your individual circumstances. How our information is created and how it's used.
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