Hospice care and PH

Far more than ‘a place you go to die’, hospices provide valuable palliative care to people diagnosed with a progressive condition like pulmonary hypertension. Mary Ferguson reports.

The hospice movement is over 30 years old, but misconceptions abound, and sadly, a lack of understanding is stopping some people accessing the life-enhancing care these places can provide.

Hospice care transforms hundreds of thousands of lives every year but many wrongly assume that being offered it means they are about to die. Others imagine gloomy, depressing places reserved for the sickest of the sick.

Neither of these things are true. Hospice care is truly holistic, looking after physical, emotional, social and spiritual needs; and as result, the services they offer are wide-ranging.

Hospice care can include symptom management and pain control; complementary therapies such as massage and aromatherapy; counselling and psychological support; practical and financial advice; physiotherapy and occupational therapy to help people remain independent; spiritual care and companionship support.

FACT: There are at least 125,000 volunteers supporting hospices throughout the UK. The value of their contribution is estimated to be more than £200 million each year*

The vast majority of these services (83%) are provided in community settings and most people receive support from a hospice whilst they are living at home.

This can include attending ‘day therapy’ support and whilst the coronavirus pandemic has temporarily limited some of these services, many have adapted to virtual consultations and online get-togethers.

Inpatient units remain open for short stays and many patients benefit from the symptom control support they provide.

Hospice UK is a national charity that supports hospices and those who access the care provided by them. Melanie Hodson, their head of information support, told Emphasis:

FACT: Charitable hospices in the UK are funded mainly by community fundraising, charity shops and hospice lotteries. Some receive NHS funding too, but this varies across regions* FACT: There are more than 210 hospices in the UK, caring for 200,000 adults, children and babies*

“Hospice care is focused on the person and their family; from managing someone's pain, to looking after their emotional, spiritual and social needs, hospice care supports the whole person, helping them to live their life to the full. It’s an approach that focuses not on what is the matter with you? - but instead asks what matters to you?”

Hospices provide care for those around the patient too. Counselling services (without the long waiting lists often encountered via other routes) are often provided for partners and relatives, as well as complementary therapy services to aid general wellbeing.

Some people receive hospice care for many years and relatives can continue to access support long after their loved one has died.

Melanie added: “Sometimes, people have concerns about accessing hospice care, thinking perhaps that hospices are all about support in the very final days of life. In fact, the availability of hospice care is dependent on need rather than prognosis. This means that people can use hospice care at any stage of their condition, not just at the very end of their lives.”

There are over 200 hospices in the UK. You can find your nearest one by visiting www.hospiceuk.org FACT: The majority of hospice care (83%) is provided in communitybased settings, including home care/hospice at home, outpatient services and hospice day care*

Over the page, four PHA UK members share their experiences of hospice care…

*Source: Hospice UK

“People can use hospice care at any stage of their condition, not just at the very end of their lives”

Fiona Ballantyne from Falkirk in Scotland lives with pulmonary arterial hypertension and pulmonary fibrosis. She has been accessing services from Stratchcarron Hospice since the end of 2019.

“When hospice care was first mentioned I was shocked, but the first time I visited the hospice I was surprised by how nice, cheerful and friendly it was.

I went to what’s known as ‘day therapy sessions’ every week until lockdown began. A volunteer driver would pick me up with my oxygen tank and my handbags and the first thing I’d do when I arrived was sit and have a cup of tea with everyone.

At any one time there would be between ten and 20 of us in a group, all with different health conditions. A lot have cancer, and a few have breathing conditions, such as COPD. It’s a real mixture.

We could then choose what activities Keech Hospice in Luton.

“It was my PH specialist who initially suggested I might benefit from hospice services. I think my face said it all, but he assured me it was palliative care, not end-of-life care.

It was 2017 when I first started attending the palliative care centre at Keech and I initially went for 11 months, to help with my anxiety. I was always welcomed with open arms.

Everyone had such a laugh; it’s amazing what they do. I would have a weekly one-on-one chat with the nurses about any problems or niggles and would be able to see the on-site doctor if I we would like to do; anything from crafting to nail treatments and complementary therapies. I’ve had massages there that have felt like counselling sessions because you can just talk to the massage therapist. They just listen, and sometimes that’s exactly what you need.

The care continued even through lockdown. We’ve had group chats via Zoom, and the hospice even sent us tea and biscuits out to our houses so we could all enjoy them together.

We’ve been sent craft projects too. And when I was in hospital having my IV line fitted, they contacted me every week to see how I was. I’ve made a lot of friends through the hospice.

People hear the word ‘palliative’ and needed to. Everything was taken care of.

There is even a hydrotherapy pool, music therapy and complementary therapies like reiki and reflexology. Lunch was always fantastic, and we would all sit and eat together round the table. In the afternoons we would sit and chat, and not just about our illnesses. It was just a very relaxing place that I felt safe in.

I also joined the hospice walking group, and it was amazing how much I gained mentally from going for a walk and doing more than what I thought I could. We all felt we were on the same all they hear is ‘end of life’. But hospice care is such a positive thing, and I’m really missing being able to go to my weekly sessions.

If you are offered hospice care, my advice would be to grab it with both hands. Take any help that you’re offered. As my father would say, refuse nothing but blows! It’s taken

Kim, 52, lives in Bedfordshire and has pulmonary arterial hypertension. She receives care from

me a long time to learn to accept help.” level, even though we all had different illnesses. We all encouraged each other, and I made friends with quite a few people.

I have some really good memories of my time at the hospice. Everything was focused on the positive; our illnesses were nothing to be ashamed of.

After 11 months it was felt that

I had benefitted enough to move on and manage the anxiety around my condition myself. But I did go back again for nine months and the door has been left open for me to go back again if I need it.

Everyone has that perception of what they think a hospice is like.

But mine is the most upbeat, positive place you can walk into, and that’s what shocked me - in a good way!”

Lorretta Walsh is 58 and has PH in association with connective tissue disorder. She has been supported by St. Catherine’s Hospice in Crawley since March.

“I was diagnosed with PH in February 2019 and a year later, my specialist suggested I talk to the palliative care team at the hospital. I was horrified. My immediate question was whether that meant I was going to die, and I assumed there was something they weren’t telling me.

But everything was explained to me, which made me feel much better, and I was referred to my local hospice – who have been absolutely wonderful.

It was just after lockdown started so some of the support was remote. I had counselling sessions over the phone, which really helped me come to terms with my diagnosis.

I had physiotherapy sessions in my home (with strict COVID-19

“After a couple of months of having home visits from hospice staff, Mum had a two-week stay in the Inpatient Unit while she adjusted to new drugs. She had been prescribed morphine which helped her breathing but had nasty side effects, so they wanted her to go in and be monitored closely while they tried something else.

She was very scared about going in at first and didn’t want to leave her cat, but she came around to it. We could all see her anxiety was at an all-time high, as well as her physical symptoms being bad, and she needed a break. She was very tired.

When she first went in she was like a rabbit in headlights, but as the days went on, she started to relax. The staff were all so cheerful and had Mum laughing and joking with them. After two weeks, she came home and was so much better. She was so relaxed, and they had sorted her medication out, guidelines followed) which helped with my mobility issues caused by breathlessness and the tight skin as a side effect of scleroderma.

I saw the lymphoedema nurse onsite at the hospice to help me deal with the swelling in my legs (a side effect of both sclereoderma and cancer treatment I had before I developed PH). It has to be closely monitored as it can turn into fluid retention. I was surprised by how warm, cheerful and non-clinical the environment was.

Visits were followed up by telephone calls and the hospice do keep in touch via telephone on a regular basis. It's good to know I can always phone them too and someone will always get back to me. which gave her a much better quality of life. I’m so glad she had that help.

I was mum’s main carer and although I didn’t live with her, I was there most days to help her, and her stay gave me a little respite too as I knew she was in safe hands.

The nurse specialist at the hospice would ring me regularly, just to see how I was getting on. Mum passed away at home, with me by her side, and the hospice later offered

The hospice has also been instrumental in managing my pain relief and liaising with my GP, and overall, I have found their help and support invaluable. The hospice care complements the care of my specialist centre very well and they offer support for family members too. My partner doesn’t need it now, but it’s very reassuring to know that it’s there if and when he does.

I think it’s important that people realise there is a difference between palliative care and end-of-life care.

People automatically think hospice care equals cancer and death, but it’s not just about people who have cancer and it’s not just about dying. It’s about

Julie Eastwood’s mother Rena had PH and spent two weeks at St. Catherine’s Hospice in Preston for symptom management.

helping you make the most of each day.” bereavement support. It felt very much like they cared for me too.

I wanted Mum to access hospice are sooner as I had seen how much it helped my dad six years ago when he had cancer. I always thought a hospice was just a place you went to die, but it’s so very different.”

Hospicecare