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Palliative and end of life care

I was fortunate enough to attend a conference in Stamford organised by St Barnabas https://stbarnabashospice.co.uk/ There were some fascinating speakers, and I came away with these points:

St Barnabas Hospice is the leading charity in Lincolnshire providing palliative and end-of-life care to adults living with a life-limiting illness in addition to terminal illness.

Less than 0.3% of the £500 million spent on cancer research is allocated to palliative care, with funding for non-cancer conditions likely to be even less. The recent discussion in the House of Commons regarding the Terminally Ill (Adults) Bill raised the need for more research into palliative care.

It was such a treat to see the Medical Detection Dogs featured in the final programme from Crufts this year. We're going to hear more about this charity from Matt Kefford at our next meeting in Stamford on 25th March 2.00pm at the Stamford Day Centre, Ryhall Road, PE9 1UF.

Can you imagine if a dog could detect an illness well before we had any idea there was a problem and reduce the need for intrusive, unpleasant and expensive diagnostic tests?

Well for over 15 years, Medical Detection Dogs has been training dogs to do just that; to save lives using their amazing sense of smell.

It does this with Medical Alert Assistance Dogs and Bio Detection Dogs, both of which can be trained to detect even the tiniest trace of the smell caused by a medical condition.

Bio Detection Dogs are trained to detect diseases like cancers, Parkinson’s, malaria and bacterial infections.

Medical Alert Assistance Dogs support people with complex health conditions like diabetes, PoTS and severe allergies when they are in danger of having a potentially life-threatening medical event, so they can take the necessary action and prevent hospital admission.

The charity is already making a huge difference to many by training dogs to not only save lives but also restore the confidence and independence that many of its clients lose when they become ill. And the list of diseases the world-leading Bio Detection research focuses on is growing all the time.

Medical Detection Dogs relies solely on the public’s generosity and goodwill. Please help it continue its life-changing work.

Your support will save lives.

To find out more visit www.medicaldetectiondogs.org.uk

Or follow at Facebook: #MedicalDetectionDogs Twitter: @MedDetectDogs Instagram: @medicaldetectiondogs

LOROS

The care we provide to terminally ill patients

Remit:

Providing care

We deliver free, high-quality, compassionate care and support to terminally ill patients, their family and carers. We deliver care that is special and unique to each individual.

What we offer

∙Specialised care for those over 18 with complex problems who are suffering from a terminal illness when cure is no longer possible

∙Short-stay inpatient ward for symptom management and/or end of life care

∙Outreach support in the patient’s home - Clinical Nurse Specialist and home visiting service

∙Day therapy.

∙Complementary therapy

∙Counselling

Eligibility

Am I eligible for care at LOROS?

∙Patients must be registered with a GP within Leicester, Leicestershire or Rutland

∙Referrals are generally made by a GP, hospital consultant or hospital palliative care team, or are facilitated by a community nurse specialist, with the exception of Day

Therapy drop in

∙Patients eligible for referral are usually suffering from advanced cancer or other life-limiting conditions, such as Motor Neurone Disease, heart failure or respiratory disease

All of our services are free of charge to all patients based upon clinical need

How to refer

Referrals are accepted from GPs, hospital consultants and community teams with the exception of the Day Therapy drop-in service. Our Complementary Therapy team receives referrals only from LPT palliative nurse specialists. Referrals to the Compassionate Neighbours service can be made by any health and social care professional.

Area covered: Leicester, Leicestershire and Rutland.

LOROS​ Groby Road​ Leicester​ LE3 9QE

Marie Curie

Remit:

Marie Curie provides a better end of life for more people, whatever the illness. We’re here for anyone living with any illness they’re likely to die from, and those close to them. We provide free palliative and end of life care, information and support. We campaign for more people to have a better end of life and fund palliative care research.

Marie Curie Nurses and healthcare professionals provide expert hospice care, whatever the illness, in the comfort of home and hospice. Whether you have months, weeks or days left to live, our services help provide you with clinical care and emotional support, assisting you so you’re able to live the best life you can to the end.

Areas Covered and services provided East Of England: Bedfordshire, Cambridgeshire, Essex, Hertfordshire, Norfolk and Suffolk

Hospice Care at Home: Our nurses, healthcare assistants and other healthcare professionals in the East of England bring the clinical, practical and emotional help you need to you, in the comfort of your own home. And we offer support to the people close to you too – from reassurance and practical information to letting them take a break.

Overnight care is available in Hertfordshire, Suffolk, Mid and South Essex, Great Yarmouth and Waveney. Daytime care is available in areas of Essex. (None in Cambs or Norfolk)

Urgent Hospice Care at Home: Whether you're ill or looking after someone who is, you know that symptoms can change at any time, day or night. Terminal illness doesn't adhere to a schedule, so neither should the care you get. Urgent hospice care at home is there for you when you need it.

Our Urgent Hospice Care at Home service is available in areas of Essex in partnership with local hospices.

Marie Curie Companions over the phone: Companion volunteers are there to offer support and a listening ear for anyone in the East of England with an illness they're likely to die from.

If you want someone to talk with, regularly and from the comfort of your own home, you can receive calls from the same Marie Curie Companion each week. (Phone only)

Compassionate Workplaces training

The Compassionate Workplaces programme helps employers in the East of England support staff affected by terminal illness or grief, equipping managers with the tools they need to help their teams through this difficult time. The training can be delivered virtually or in-person.

Midlands:

Coventry, Derbyshire, Leicestershire and Rutland, Lincolnshire, Northamptonshire,

Nottinghamshire, Birmingham and Solihull, Dudley and Walsall, Herefordshire, Staffordshire and Stoke, Warwickshire.

Hospice Care at Home: Available in Derbyshire, Coventry and Warwickshire, Leicestershire and Rutland, Staffordshire, Lincolnshire, Northamptonshire, Birmingham, Solihull, Dudley & Walsall and Herefordshire.

Urgent Hospice Care at Home: Available in Lincolnshire and Northamptonshire.

Marie Curie Companions at Home: Companion volunteers in the Midlands provide practical and emotional support at home, over the phone and in hospital. They offer free, flexible and personalised help to people at the end of life, and to their families and carers. (Phone and in-person)

Companions at Home volunteers are available in Leicestershire, Birmingham, Solihull, Coventry, Warwickshire, Derby, Dudley, Walsall, Hereford, Worcester, Staffordshire, Stoke on Trent, Northampton, Lincolnshire, Nottingham, Shropshire, Telford and Wrekin.

Compassionate workplaces training: Helping employers support staff affected by terminal illness or grief.

How to refer

How to get hospice care at home

The health and social care professionals looking after you can refer you into the services. This includes your hospital team, district nurse, care home staff or GP. Your district nurse or GP will discuss with you whether our services are right for you and what type and duration of care would be most helpful. If you both agree you would benefit from the care we offer, they will contact us and organise a Marie Curie Nurse to visit you.

To get referred to a Marie Curie service directly, contact your GP, district nurse or hospital team.

Sue Ryder

Remit: Because no-one should face death or grief alone. We provide grief support for everyone who needs it, we provide end-of life care and support to people in their last few weeks or final days, we are speaking up for people who are grieving or dying to influence and campaign.

Grief support: At Sue Ryder, we believe grief deserves better. We want the nation to open up about death and grief. Together we can make sure no one faces death or grief alone.

End of life support: We provide end-of-life care and support from our specialist centres and in people's homes.

Campaign: We campaign for everyone who is approaching the end of their life or grieving to have access to the right support, at the right time. And we seek to break down the barriers to talking about dying and grief - so we can all be better prepared and better equipped to be there for each other.

Areas covered and services provided

Sue Ryder Thorpe Hall Hospice, Peterborough

Thorpe Hall is able to admit patients who are registered with a GP from the following ICBs:

Peterborough and Cambridgeshire, Southwest Lincs, South Lincs, East Lincs, West Lincs.

For patients registered outside of these areas, funding will need to be agreed prior to the referral being accepted. The only specialist palliative care inpatient unit in Peterborough. We provide care and support for people who are living with life-limiting conditions, as well as supporting their families.

∙Inpatient care

∙Hospice at Home

Our Hospice at Home service is available seven days a week and provides care to patients with a life limiting illness who wish to be cared for at home at the end of their life. This care is available to service users who have Continuing Healthcare Funding in place, and where care or symptom support needs have increased due to deterioration of their overall illness.

∙Wellbeing and community support service

When you first meet a member of our team, whether in the hospice, at home or in the community, we will ask you about your practical, emotional and spiritual needs as well as your physical health.

At every Sue Ryder hospice, we have a team whose job it is to listen and support you and your family. This could include connecting you with local community groups or organisations and other Sue Ryder support services.

How to refer

Hospice

Referrals to our services can be made by GPs, District Nurses, and lead health professionals and specialists supporting people with a palliative diagnosis. Thorpe Hall is able to admit patients who are registered with a GP from the following ICBs:

Peterborough and Cambridgeshire, Southwest Lincs, South Lincs, East Lincs, West Lincs.

For patients registered outside of these areas, funding will need to be agreed prior to the referral being accepted.

https://www.sueryder.org/documents/18/sue-ryder-thorpe-hall-referral-form-2023-24.docx

Hospice at Home referrals

The service is available seven days a week, and we are happy to take referrals from healthcare professionals at any time. Sue Ryder Thorpe Hall Hospice at Home service is commissioned to cover patients whose GP have a Peterborough postcode.

To refer a patient for Hospice at Home services, please complete the Cambridgeshire and Peterborough Clinical Commissioning Group’s Continuing Health Care Fast Track referral form and the associated NHS consent form.

St Barnabas

Our aim is to enable people to live as fully as they are able for however many days, weeks, or months they have left. The services and expertise we offer for people from the age of 18 years and​upwards have been developed in a variety of care settings to support a wide​range of needs from controlling pain and other distressing symptoms to​accessing welfare benefits advice. St Barnabas Hospice is the leading charity in Lincolnshire providing palliative and end-of-life care to adults living with a life-limiting or terminal illness.

Our Vision

Our Vision is a world where dying with dignity, compassion and having choices is a fundamental part of a life.

Our Mission

Our Mission is to ensure all individuals facing the end of their life in Lincolnshire receive dignified, compassionate care when they require it and where they ask for it.

Area covered and services:

In patient Hospice care

Lincoln – 11 bedded unit in Lincoln

Grantham – 6 bedded hospice within Grantham and District General Hos

Stewart H has been carrying out interviews with our supporters on various topics and this month he's been chatting with John regarding his cancer treatment and his experience of an MRI scan. If you'd like to know more about other people's experiences, you will be very welcome to attend one of our support meetings or please email [email protected] and we can put you in touch with someone who has perhaps been on the same journey as yourself.

Thank you to Stewart H for carrying out the interview and for John for sharing his experience.

Stewart: Can you tell me about the moment you first found out you needed to undergo tests or scans?

John: My first tests and scans were in February 2023. That was when things started to feel very real.

Stewart: What kind of tests or scans were you sent for, and how were they explained to you?

John: I had blood tests and MRI scans. Everything was clearly explained to me by both my consultant and the specialist nurse, which helped ease a lot of uncertainty.

Stewart: What was going through your mind in the days leading up to your first test or scan?

John: I kept thinking about the results. I already had a sense that something was wrong, but I didn’t know how serious it was. Not knowing was tough.

Stewart: How did the medical staff treat you during the testing process?

John: The medical team was excellent. They took the time to explain each procedure thoroughly and made sure I was comfortable with what was happening.

Stewart: Were there any particular moments during the scan or test that stood out to you emotionally or physically?

John: Yes, during the actual scans, the nursing staff were brilliant. They helped me to totally relax, which made a big difference in what could have been a very stressful experience.

Stewart: Did you feel well-informed and prepared going into the procedure?

John: Absolutely. Thanks to a detailed pre-assessment consultation, I felt well-informed and prepared. I knew what to expect.

Stewart: How did you cope with the wait for results?

John: I coped remarkably well, but I did find myself going through all kinds of scenarios in my head. You try to be strong, but your mind wanders.

Stewart: What were your thoughts and feelings when you received your results?

John: It felt like I’d just walked under a bus. Everything changed in that moment. I kept thinking, “What’s next?”—about my life, my treatment, and whether or not it would be successful.

Stewart: Have your experiences with testing changed over time as your treatment continued?

John: No, not really. The process has stayed much the same throughout my continued treatment.

Stewart: Was there anything you wish someone had told you beforehand about what to expect?

John: To be honest, my consultation was first-class. I sat down with the ENT Oncology Consultant, an oncologist, and the specialist nurse. We discussed the stage of my cancer, the surgical procedure to remove my thyroid and the left side of my vocal cord, and talked through the best- and worst-case outcomes. I felt fully informed.

Stewart: What advice would you give to someone about to go through similar tests or scans for the first time?

John: Presume nothing, and ask as many questions as you can. Have someone with you—two minds are better than one. And definitely speak to the specialist nurse—they’re very well informed and can really help you understand everything.

Stewart: Did you find any comfort or support from certain people or places during the testing process?

John: Yes, I found a lot of comfort and support from the consultants, nurses, my oncology specialist nurse, and the whole oncology team at Addenbrooke’s. My family was also a huge support throughout.

An MRI (Magnetic Resonance Imaging) scan is a medical imaging technique used to create detailed pictures of the inside of the body. It uses strong magnetic fields and radio waves—rather than X-rays—to produce images of organs, soft tissues, and bones. It’s especially useful for detecting abnormalities in the brain, spine, joints, and internal organs. The procedure is painless, though patients must lie still inside a large tube-shaped scanner, often for 30–60 minutes.