Frequently asked questions

Your questions answered

We appreciate that if you or a loved one has been recently referred to us that you might have a lot of questions about our hospice and the care we can provide. That is why we have tried to put together a list of our most frequently asked questions.

If you cannot find the answer to your question, please contact us at Hospice.Info@hje.org.uk or on 020 7806 4040. We’re always happy to help.
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General

Are hospices just for people who have a few weeks to live?

We see people at different stages of their illness. From those who have been recently diagnosed and receiving treatment to those who are nearing end of life. Our focus is on enabling our patients to live well for as long as possible.

What does palliative care mean?

Palliative care is an approach which aims to improve the quality of life and overall wellbeing of someone living with a life-limiting illness and those close to them, including family members and carers.

You can have palliative care at any stage in your illness and it can be provided alongside any other treatments, therapies and medicines aimed at controlling your illness, such as chemotherapy or radiotherapy.

Palliative care also includes caring for people who are nearing the end of life – this is often called end-of-life care.

Is palliative care the same as end-of-life care?

End-of-life care is different to palliative care. This is because palliative care, although it includes caring for people who are nearing the end of life, is much broader and can last for longer. Some people have palliative care for many years, it does not necessarily mean you’re going to die soon.

End-of-life care offers treatment and support for people who are near the end of their life. Its aim is to help someone be as comfortable as possible as they approach end of life, as well as provide them and those close to them with practical and emotional support, such as making a Will or planning a funeral.

What does holistic care mean?

Holistic care underpins everything that we do at St John’s. It is an approach which focuses on caring for the whole person – providing support for your physical, mental, emotional, spiritual and social needs. It's rooted in the understanding that all of these aspects affect your overall health, and so, being unwell in one aspect will affect you in others. We are also here to support those close to you, including your family, friends and carers.

Learn more about the services and support we provide.

Do you only care for people with cancer?

No, we do not only care for people with cancer. We care for any person living with a life-limiting illness such as cardiac, respiratory, or renal conditions, HIV, cancer, motor neurone disease, multiple sclerosis, and Parkinson's.

Last year, 42% of the patients we cared for did not have a cancer diagnosis.

How much does your care cost?

We get asked this question a lot and the answer is that you do not need to pay for the care you receive from St John’s Hospice. All our care is completely free of charge.

It costs over £7 million to be able to offer our quality, holistic care free of charge and to do this we rely on funding from the NHS (30%), the charitable St John and St Elizabeth Hospital (30%) as well as public fundraising (40%).

How do I get referred?

We welcome referrals for patients and/or family members living within our catchment area. This includes the London boroughs of Westminster, Brent, Camden, Hammersmith & Fulham, Islington, Kensington & Chelsea.

We accept referrals made by a patient’s GP, hospital doctor, nurse specialist and community nurse or by other professionals working across health and social care services. For child bereavement support services we also accept referrals from parents, carers, teachers or other professionals working across health and social care. Young people over 16 can refer themselves.

Find out more about our referrals process.

How do I get to the hospice?

If you are able, we ask you to make your own way to St John’s. Our address is:

St John’s Hospice
60 Grove End Road
London
NW8 9NH

We are just a short walk from St John’s Wood Underground Station (Jubilee Line). If you have difficulty accessing public transport or have reduced mobility, we can provide transport to our hospice via our ambulance service. We are more than happy to discuss this further with you.

Is there parking?

Unfortunately, there is no on-site parking at St John’s. The nearest car park to our hospice is Q-Park on Kingsmill Terrace which costs £5 per hour for the first 5 hours, or £30 for 24 hours. There are also limited pay and display bays in the surrounding streets.

We encourage patients and visitors to travel to us via public transport or via taxi/minicab. Please ask your driver to use our entrance at Grove End Road.

I do not have a fixed address or I have no recourse to public funds; can you still support me?

Yes - We support people who have no fixed abode and also people with limited immigration status.

We recognise that illness does not discriminate - it affects people regardless of their age, gender, ethnicity, sexuality or beliefs. We do not exclude people who might have learning disabilities, a history of mental health or substance use.

What if English is not my first language?

We are partnered with an interpreting service called Silent Sounds and encourage you to use it so that we can best understand your needs and support you and your loved ones.

Please let us know what your first language is at the time of referral or arrival to our hospice and we will facilitate interpreting services accordingly.

Can you support me in planning my funeral and writing a Will?

Although we are not funeral directors, with your consent, we can signpost you to some local directors or charities who can help you with planning and funding your funeral.

We can also signpost you to charities who can help with Will writing including access to our free Will writing service called Bequeathed.

What support can I get at home?

For patients living within Westminster, we have a Community Specialist Palliative Care team who can provide ongoing support in your own home. You will have a dedicated Clinical Nurse Specialist who will visit you from every week through to every six weeks depending on your need.

For patients living within Westminster, Kensington and Chelsea, and the South part of Brent and who are in the advanced stage of their illness we can provide Hospice@Home, enabling you to remain at home in familiar and comforting surroundings and to die at home if that is your preference. This care will be delivered by our team of experienced Healthcare Assistants.

Will the St John’s Community and Hospice@Home teams take over from my GP or district nurse?

No, your GP or district nurse will remain in charge of your care and our teams will work closely alongside them to ensure that you receive the best care possible.

Inpatient care

How long will I stay at the Inpatient Unit?

This varies from patient to patient but on average, we find that patients will stay with us for a period of two weeks. We are not a long-term facility.

As an inpatient at St John’s, we can support you with getting difficult symptoms under control so that you can return home feeling more comfortable, and we can provide periods of respite or rehabilitation to enable you to continue living independently or to support your loved ones.

Will I have a private room?

Due to infection control, all patients will be admitted into one of our private rooms at first. However, after 24 hours you may be moved into our single-sex bays with up to 2 other patients. We cannot guarantee that you will be in a private room your whole stay but will do our best to accommodate your preference.

What should I bring with me?

Please bring all tablets and medicines you are currently taking and an up to date medication list, as well as any legal paperwork you have relating to your care such as Lasting Power of Attorney and Advance Decision to Refuse Treatment.

Hospice@Home

Can I choose my Healthcare Assistant?

Although it is not possible to choose the Healthcare Assistant who will deliver your care, we will endeavor to take your needs into consideration and ensure that you have an experienced Healthcare Assistant who can meet your needs.

Can my Healthcare Assistant help with household jobs?

Our Hospice@Home Healthcare Assistants are there to care for you and therefore duties around the house like cleaning, shopping or picking up your prescriptions are not generally part of their role. These duties are usually organised by your regular care agency and most pharmacies will be able to deliver to your home.

Can my Healthcare Assistant take me out?

The service is set up to provide care at home only and therefore our Healthcare Assistants are not able to take you out.

Can Hospice@Home be provided for more than 2 weeks?

The service is only commissioned to provide up to 2 weeks of care per patient. During this period the Hospice@Home coordinator will review your care needs and can make appropriate arrangements for ongoing care if needed.

Can I pay for a Healthcare Assistant to provide additional care?

No, our Healthcare Assistants are employed to work directly for our free Hospice@Home service and they do not undertake private work.

Do I need to provide refreshments for my Healthcare Assistant?

No, the Healthcare Assistants will usually bring their own snacks and drinks.

Will my Healthcare Assistant be sleeping at night?

No, the night shift is a waking night which means the Healthcare Assistant will be awake for the duration of their shift.

Will my Healthcare Assistant speak the same language as me?

All our Healthcare Assistants are fluent English speaking. In general, we do not have Healthcare Assistants that have a second language.

Can I continue to smoke while receiving Hospice@Home care?

We appreciate it is your choice to smoke in your own home however we would request that our Healthcare Assistants can work in a smoke free area if possible.

Can I receive Hospice@Home if I have a pet/s?

Yes, as long as the animal is not a danger to our staff. Please note that it is not the responsibility of our Healthcare Assistants to care for your pet or take them out for walks. You will need to make additional arrangements.

Lymphoedema care

What is lymphoedema?

The lymphatic system transports fluid to the lymph nodes, which filter toxins, waste, and other unwanted substances from your body.

When the lymphatic system is damaged, it can stop working properly, meaning that fluid builds up in the affected limb and causes it to swell. Your body might also get inflammation in the affected area, resulting in scar tissue called fibrosis. This makes it even more difficult for your body to get rid of the excess fluid.

Why does it happen?

One type of lymphoedema is hereditary, so some people might be born with it, or develop it later on in life.

The other type can develop after surgery, radiation, other trauma, high body weight, or if the skin, lymph nodes or vessels become infected. Women, who have breast cancer treatment that involves removing lymph nodes, or radiation therapy, are at higher risk for lymphoedema. Other cancer-related surgeries, which involve removing lymph nodes, also put people at higher risk. These include head and neck, genital, bladder and colon cancers and melanoma.

What are the signs?

Catching lymphoedema early, and getting treatment, can make a huge difference, as you can prevent infections, minimize symptoms, and avoid the swelling from getting any worse. If you experience any of the symptoms of lymphoedema listed below and are worried, get in touch with your GP straight away:

Swelling in any part of your body;
Area feeling heavy and tired;
Tight or hard feeling skin or redness;
Aching or other discomfort in the area;
Less movement in the joint of the area;
Trouble fitting into clothes even though you haven’t gained any weight.

Sometimes lymphoedema can be triggered by a skin infection. In this case, you might experience:

Pain;
Swelling;
Redness of the skin;
The skin feeling hot;
Feeling feverish or generally unwell.

How can I reduce the risk of developing lymphoedema?

Maintain a healthy body weight.
Use your prescribed compression garments.
Avoid extreme temperatures, like hot tubs, saunas, sun beds, or ice baths.
Prevent skin infections in the affected area by taking care of your skin when injured, moisturising every day and using an insect repellent in the summer.
Try to avoid wearing tight clothes or jewellery.
Tell your doctor about any changes in size, colour, temperature, feeling, or skin texture in the affected area straight away.
Exercise regularly. However, it’s important to know that some kinds of exercise can increase your risk of lymphoedema, so ask your GP for advice.
Ask your GP for a referral to our Lymphoedema service.

Why have I been prescribed compression garments?

If you are diagnosed with lymphedema, your GP may recommend that you begin wearing compression garments. These stimulate the slow of lymph fluid by applying pressure to the tissues.

You should wear the compression garments during the day, remove them at night and alternate with a clean set every other day.

Why should I maintain a healthy weight as someone with lymphoedema?

If you have lymphedema, it’s really important to maintain a healthy weight. This puts less stress of your lymphatic system and makes it easier to manage the condition. When you’re overweight it’s harder to put on compression garments, they may not fit well and therefore be uncomfortable. If needed, your GP can also give you advice on managing your weight.

If you’re not sure what a healthy weight range is for your height, you can use the NHS BMI calculator.

How long will I receive lymphoedema care?

Following your initial assessment you will see our practitioners every three months for the next two years. From then, there will be a yearly assessment ensuring your symptoms are stable and well managed.

In these appointments our practitioners or will carry out a review of your skin, compression garments and any other management strategies you may have been prescribed with. They will also provide you with the information you need to better understand your condition and the things you can do to manage it.

Bereavement support

I am bereaved, how can you support me?

Our bereavement support begins from your loved ones initial referral and continues throughout their care – not only once a loss has been experienced.

We can provide group or individual adult bereavement support and counselling for family members, carers and friends. We also provide specialist bereavement support for children and young people. As well as one-to-one support, we create opportunities for them to meet up with peers who have also experienced loss. We also provide guidance to parents and carers as well as support and training to teachers on how to best help them through this experience.

Learn more about our bereavement support for children and adults.

How long will I need bereavement support?

There is no time limit as such but our team will complete an initial assessment and identify how many sessions you might require. If further support is needed once we have completed our sessions, with your consent, we will signpost you to a suitable agency.

Your questions answered

General

Inpatient care

Hospice@Home

Lymphoedema care

Bereavement support

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