Keeping the faith

West Bromwich Priest Jane Dicker (known as Mother Jane) has pulmonary hypertension, has worked with hospices, and is under palliative care services herself. Opposite, she shares her unique perspective on this type of care and explains how her faith helps guide her through illness.

Mother Jane has PH in association with brittle asthma (a rare form of severe asthma), which she has lived with since the age of 17. She was diagnosed with PH in 2013. She has worked within parishes all over the country, with adult and children hospices, and as a university / higher education chaplain.

My work with hospices is varied. Sometimes it can just be talking with patients, and an opportunity for them to have a laugh and see the human side of what it means to be ordained. It can be playing a game of cards or reading a book – and not necessarily the Bible!

I’ve helped lots of people who are not religious. Church of England priests are for everybody; it can be a misconception that priests are only there for people who have faith.

It has to be trodden very lightly, because some people can be concerned that you have come to ‘talk them into’ faith, and that needs lots of reassurance. For that reason, I’ve often gone into hospices wearing just a badge instead of a dog collar.

I hope that through my work with hospices, people found some peace, and were able to feel a little bit calmer about things. I hope they didn’t feel quite so overwhelmed, as we were able to break things down.

It’s very reassuring that the care is there for me if I need it

It’s vital for people to realise that palliative care doesn’t mean it’s ‘the end’. It’s about having the best quality of life that we can, given all our limitations.

I think that some misconceptions about hospices are historical. People have memories of ‘half-truths’ that live on with them, so then it can be like a mountain to climb for people to understand that things have really changed.

I believe hospices play a very important role in helping people with life-limiting diseases and it’s very important to start the conversations early.

I was first referred to connected palliative care when I was diagnosed with suspected cancer, and I have to admit I did panic initially, so I understand how some people feel. But then the palliative care nurses came out and saw me at home and explained it all properly. I had a hysterectomy, which was cancer-free, but I’ve been kept ‘on the books’ because of my brittle asthma and pulmonary hypertension. It’s very reassuring that the care is there for me if I need it. My faith has helped me deal with ill health in several ways. One of the strands is the people that you meet, and the friendships that are built up over the years. And I think also just having God’s presence there at times has been the thing that has helped me move forward; knowing he is there in it with me.

It’s hope, and hope in itself is a very important part of what my faith is about. Hope in the things that are seen, and hope in the things that aren’t seen.

Don’t get me wrong, there are bad times, and like anyone I have my moments. Things can get overwhelming, and faith doesn’t mean I am ‘shielded’ from any of those things, but it does help me to get back on my feet again.

I get a lot of support as a priest and I’m lucky in that respect. I have a Spiritual Director and I belong to a community where I get support from a Religious Sister, so I have that network set up.

My health conditions have affected my ability to work at times. I’ve spent a lot of time in hospital, for either admissions or appointments, but colleagues are very kind in terms of stepping up and helping.

My work as a priest is a big part of my identity and it’s difficult knowing that I will eventually have to retire on health grounds. That will be a big adjustment and I’m trying to prepare myself for that.

My parishioners know I have health issues, but they don’t know all the ins and outs. Some of them are really good about it, and some are not so good. That’s the way life is; either people ‘get’ and understand your health, or they don’t.

Mother Jane has also kindly contributed some words to our new palliative care publication. For full details, please see page 16.

We’re all going on a SUMMER HOLIDAY!

Whether it’s a few days at home or a fancy foreign vacation, after the last couple of years we could all do with a break. We asked our members for their top tips and favourite pics from their experiences of holidaying with PH…

“Book everything in advance, so you can ask if there are flights of stairs etc. This photo was in Dawlish, Devon in 2017. There were several nice restaurants in the area without steps” Carol Peters “Take your time and listen to your body, but also if you feel like you can do it, don’t be scared! The photo is with my youngest son on holiday in Norfolk” Lisa Marsh

“Plan ahead and try to remain calm” Daniel Redmond

“If you’re staying in a hotel, make sure beforehand either that there is a lift or that they can accommodate you on the ground floor” Patricia Harries “I have flown to New Zealand with oxygen and provided you plan early, nothing is impossible. The photo is of Hobbiton there and it was taken just before lockdown” Kathy Davis

“My top tip for a nice holiday is not to tick boxes. It doesn’t matter if you only visit one place in a day, as long as you take your time and enjoy yourself. If you get too tired, stop and take a rest. This photo is my husband and myself in Dublin in 2016” Linda Donn

"Plan well in advance if possible but be prepared for change at short notice. The photo is of Broadstairs in Kent – I needed an electric wheelchair and although it got me down the steep hill to the beach it was a slow trek back up!” Phill Richards

“Make sure you have all your medication and oxygen, if needed, in place. After that relax, stay positive and enjoy your holiday. We can still have a great time as long as we listen to our bodies” Roy Dewar “Be organised with medication and try to go somewhere that is flat for walking. We love our holidays abroad and we have a favourite place in Corfu. The photo is from Sidari in Corfu in 2019” Lou Chadburn “Make sure you are fit to travel and get advice from your PH team” Joyce Hession

“Always try to look for locations that you like but also pick places that have plenty of benches so you can sit down and rest while enjoying your holiday. The photo is from April 2022 in Trieste (Italy). In April you can't go into the water because there are too many jellyfish...but they are fun to watch” Sarah Sebti, 10 (pictured with her brother) “Invest in a fold-up backpack. They are lightweight and great for day trips, short breaks, shopping, sandwiches, water bottles, glasses, macs and all that stuff that won't fit in your pockets. The photo is from The Algarve June 2015 : I was diagnosed with PH the week before we left on a six-week trip in our van with our little dog Roxy and we had the time of our lives” Janice Lyons

“If you are flying, pack all your meds, including IV pump stuff, in your hand luggage. You are allowed a bigger hand luggage allowance when flying to carry your meds. Be prepared for security to dissect all your meds, especially IV meds, and chuck it all out of boxes when it’s taken you hours to pack. This is their job so try not to get stressed about it!” Andrea Bown “Get really good travel insurance and a letter from your consultant about your condition and medication. And enjoy!” Samantha Cunningham

GETTING AWAY...

Travelling doesn’t always go in the right direction – and it’s not always PH that can derail things! Member Julie Royle explains how a recent holiday was planned to the detail, which meant she didn’t lose out when covid stopped play. Planning for a successful SUMMER BREAK

Iwanted to tell everyone about my partner Kevin and I’s recent experience of attempting to travel abroad and getting covid.

Earlier this year, after more than two years, we finally decided we should get back out there and start living again, instead of existing at home.

We're in our sixties and seventies and it matters that we still have time to travel as we've always done.

When the first lockdown came, I didn't renew my travel insurance, as we had no need for it. Little did I know it would be two years later when we could even consider going abroad again. But with three vaccines, we decided to take the plunge.

For anyone who knows me, I am very organised and thorough when I do anything. So, as soon as we agreed a date to visit France for a week, I started to plan our break:

1

Travel, hotels and insurance

We booked our ferry with Brittany Ferries because we always travel by car rather than flying. We find having our own car with everything we need with us a relaxing way to travel; we go at our own pace and enjoy everything.

We arranged three different B&Bs which is part of our travelling so we get to explore more places.

One of my first tasks was to check with the ferry company about their covid rules, and our rights if we had to cancel.

For the B&Bs we used reputable sites, booking.com and airbnb.co.uk, as they have free cancellation policies up to 24 hours beforehand with full refunds.

For my travel insurance, I went back to Staysure as they've always covered me for annual multi-trips since my

diagnosis of IPAH. I spoke to a rep rather than doing it online as I wanted to ensure we had maximum covid cover for all eventualities, either at home or abroad.

They fulfilled my needs, and my cover didn’t cost much more than it did two years ago.

2

Driving plans

Next was the car. I have a Motability car which has had the lease extended to five years from three. So, I contacted them and was told to check my MOT and service if not already done. I asked them what I needed to drive to France post-Brexit, as it's all changed since our last visit.

We needed a UK sticker not a GB one, and a current breathalyser kit for the glovebox. We also needed a breakdown kit, high vis jackets, triangle etc, which I bought at Halfords.

As I was driving the Motability car, we needed to have a form called VE103 to prove I was able to drive it abroad.

3

Tests, medication, and covid passes

I collected extra lateral flow test kits, so we could test whilst away as it's important to be negative to travel on the ferry both ways. I contacted my drug company, Sciensus, to ensure I'd have enough medication for before, during, and immediately after our break. They arranged my delivery before we were due to leave.

I normally take enough meds for the period we are away plus a week either side in case of delays etc. I packed all our meds in my insulated picnic bag I use to keep the meds at an even temperature and all together.

Lastly, we updated our domestic and travel covid passes on our phones and put them into our wallets. We also printed off hard copies of all our documentation, including our covid passes in case of WiFi failure.

We changed our currency and so all was set.

AN UNWELCOME SURPRISE...

The week before our holiday, we started to do daily testing as we had to be covid-free within 48 hours of travelling on the ferry. Plus, we had included a short trip to stay with our family friend for a couple of days before sailing on the Sunday.

We tested Thursday morning and were both negative, so we drove to Portsmouth. By the time we had arrived at our friend’s house, Kevin felt poorly with fever, aches, coughing and sneezing, so he went to bed.

On Friday morning, we tested again and he was positive. I tested positive by the Sunday, so our trip had to be cancelled.

Can you imagine, after all that time in preparation?! My friend suggested we stay a few days until we felt better as it was too far for me to drive initially, even though I was still negative. So, we stayed and rested as we were both pretty poorly.

CANCELLING OUR PLANS

The morning Kevin tested positive, I started the process of cancelling the trip.

I called the ferry company first, which was a good idea because if I'd have cancelled online, we'd have lost our money. Instead, the rep I spoke to arranged a new date in the future which we can change to suit, and we didn't lose the booking. So, it’s a good tip to call and wait in a queue as it's worth it.

I went online for the B&Bs and was able to cancel with a full refund as it was more than 24 hours before we were due to stay. If we hadn't have chosen these methods, we could have used the travel insurance, who wanted proof of positive PCR tests, which we did locally for free. But we didn't need them as our companies had reimbursed us, so all was good.

When we felt well enough, a few days later, we travelled home without stopping as we were still positive and remained so for ten days each. It was difficult driving all the way up to Manchester with no stops, but luckily we timed it well and got home safe.

If you're considering travelling, please check all aspects of your trip and don't take risks or shortcuts as it can be costly.

WHAT WE’VE LEARNED

I wanted to share our experience with you all with PH as we won't hesitate to try to travel abroad again soon. We've looked at our lives and ages, and our breaks matter to us when we can afford them.

My insurance covered all eventualities of covid, whether home or away, so there was reassurance at all times that we were okay. As I had prepared and checked everything the whole experience has been positive for us.

If you're considering travelling, please check all aspects of your trip and don't take risks or shortcuts as it can be costly. Kevin and I have only lost our holiday time, but no money, and we will attempt it again as we have peace of mind with planning.

I do hope you enjoyed reading about our experience. Good luck and happy holidays!

Behind the job title

Amanuel Teklesenbet did not take a well-trodden path into NHS nursing. Arriving in the UK from Africa as a 22-year-old refugee, he didn’t speak a word of English and dedicated his life to learning the language, gaining GCSEs and training as a nurse. Proving that anything is possible, he now works as a Clinical Nurse Specialist at the Sheffield Pulmonary Vascular Disease Unit. Amanuel told us his extraordinary story of overcoming adversity and finding a career in pulmonary hypertension that he loves.

“I will tell my daughter that her daddy has been through a lot”

Amanuel Teklesenbet

Can you tell us a bit about coming to England?

There are lots of reasons that I wanted to leave Eritrea, mainly political and religious persecution. I was fearful for my safety. I arrived in the UK on 30th October 2008 with a friend after a long journey which took a year from leaving my home. First, we travelled to Sudan, a neighbouring country of Eritrea, where we stayed for nine months. Then we had to travel across the Sahara Desert, with 24 of us packed in a little truck for nine days. We then crossed Italy and France before arriving in the UK. The journey was difficult. We heard of people being locked in refrigerators in lorries, and people dying. We arrived in Birmingham and went into police custody before going to a detention centre for processing near London, where I stayed for a couple of months. I was then moved to a centre in Barnsley, and then Sheffield, which is where I have stayed ever since.

What led you to nursing once you’d arrived?

In Eritrea I really wanted to become a footballer, but at the age of 18 I had to go into military service and become a first-aider. When I arrived in the UK, communicating was my first priority as I didn’t speak any English. In September 2009 I started college and explained about my background in first aid and said I’d like to be a nurse. As a Christian I believe in helping people, that’s a very simple thing for me, so it felt right. I knew I wanted to be a nurse, but my English was rock bottom, so I worked very hard on it. I spent three years learning the language and working hard on my reading and writing, which I am very proud of. I got my GCSEs in English, maths and science and was able to complete my nurse training at university.

How did you end up caring for people with PH?

After qualifying I started work at Sheffield’s Royal Hallamshire Hospital in the Ear, Nose and Throat (ENT) department, and was seconded to the city’s other hospital, the Northern General, to ease winter pressures. This is where I met a nurse that had also been seconded, from the Sheffield Pulmonary Vascular Disease Unit (SPVDU) at the Royal Hallamshire Hospital. He told me about the unit’s work with people with pulmonary hypertension and it felt like somewhere I wanted to be. I knew nothing about PH at that point, but I completed extra training, including a medical education programme run by the PHA UK, and I joined the SPVDU as a Staff Nurse in May 2017. I remember when it was first suggested to me that I should then apply for the role of Clinical Nurse Specialist in PH. I honestly didn’t think I’d be able to do it, because English is my second language, so I decided I’d wait a few more years. But then I changed my mind and I thought ‘why shouldn’t I apply’? I’m so proud that I did it. In my previous role in ENT we’d treat patients and then they would leave. But I’m able to develop relationships with PH patients; they come back to you, and they know you. You get to know them, and get to know their family members, and build up that relationship and trust. It’s very rewarding. During the early stages of the pandemic, I was moved to work on the covid ward and that was another challenge. As nurses we were working through the pandemic and then going home to live through the pandemic. You couldn’t get away from it. I had a newborn baby, and it was all very worrying, but I’m proud of the part I played in helping patients during this critical time.

Amanuel with SPVDU colleagues during the Sheffield Half Marathon

“I hope my story helps change some misconceptions about refugees”

Have you felt welcomed by the UK?

People in the UK, and in Sheffield particularly, have been so welcoming to me. I did worry about whether they would be. But I have lived here nearly 13 years and I can honestly tell you that I have never met anyone who has been unwelcoming or racist. I can gladly say that Sheffield people are the nicest! Patients ask me about my history and my heritage, and I am very happy to tell them my story. Many of them are surprised to hear I came over as a refugee. It’s nice to hear them say ‘well done’ and I hope my story helps change some misconceptions about refugees.

How does the UK healthcare system compare to healthcare in Eritrea?

In my country we are so poor. If you need a big operation, you must go abroad, and people ask for help on social media to raise the money. I know of someone from Eritrea who came over to the UK and she wasn’t accepted as a refugee, but she had serious heart problems. She needed an urgent operation and she had only been here a few weeks, but the NHS still saved her life. Everyone knows how wonderful the NHS is. It is the best in the world.

What do you like to do away from work?

I enjoy running, and earlier this year I was part of an SPVDU team that completed the Sheffield Half Marathon for the PHA UK. I also enjoy football and I go to Sheffield United matches sometimes with colleagues from the SPVDU. I play with an Eritrean community team, and I really enjoy cooking – especially breakfasts. I also enjoy spending time with my family. I met my wife in London, and we married in 2019, and our daughter Peniel was born in 2020. My brother lives in London but my parents are back in Eritrea. I try and go back there every three or four years, but it can be difficult. You can see people struggling, and it brings back memories.

How do you feel when you look back on your journey?

I’m so proud of what I’ve done since coming to the UK with nothing. I had no English and no experience, but to come out of my comfort zone and learn and speak and express, and develop my communication, is something I am very proud of. Besides all of this, my proudest moment is my daughter being born. I’m absolutely looking forward to telling her my story. I will tell her she is here in England because her daddy had to come over all this way, and there are hundreds of stories I can tell her about my journey. I will tell my daughter that her daddy has been through a lot, but anything is possible, and she can do anything she wants to – even if that’s working for NASA! .

“I’ve had the pleasure of working with Amanuel since he joined the team in Sheffield in 2017. He has worked incredibly hard from arriving on these shores with nothing, and his tale is a humbling reminder that overseas nurses are a crucial part of our healthcare system. The word ‘refugee’ can conjure negative connotations and Amanuel is proof that we need to open our minds and look beyond stereotypes. He is an asset to our hospital, to the PH community, and to the NHS as a whole. I hope you find his story as inspiring as I do.” Dr Iain Armstrong, Chair, PHA UK, and Nurse Consultant, Sheffield Pulmonary Vascular Disease Unit

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Our private Facebook groups are a valuable source of support and advice from people with similar lived experiences. Search: ‘PHA UK Official Facebook Group’ For those living with PH ’PHA UK Official Carers Group’ For family members, friends and loved ones ‘PHighting on: Life after loss to PH’ For those who have lost someone You’ll find direct links to these forums at www.phauk.org