Shielded voices: Lived experiences during the early stages of the COVID-19 pandemic

Shielded voices Lived experiences during the early stages of the COVID-19 pandemic

Experiences between April – June 2020

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SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

Key findings

47% 81% of people with PH said their physical health worsened during the first 3 months of the pandemic.

felt distressed by being confined to their home.

A third felt ‘extreme’ or ‘much’ distress.

58%

People with PH were more worried about those they loved contracting COVID-19 than themselves.

93% felt distressed about the fear of a loved one catching it, compared to 89% who felt distressed about the fear of contracting it themselves.

said they felt lonely.

A fifth said they felt extremely’ or ‘very’ lonely.

As time progresses, I am becoming more lethargic and less positive about things.

SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

PH and the pandemic Our survey aimed to give a voice to those who made a huge sacrifice during the early stages of the COVID-19 story.

Those shielding because of pulmonary hypertension locked themselves away to protect themselves, but just as importantly, the NHS too. And for some, as this report shows, it came at the expense of both their mental and physical health.

We conducted this survey in the early stages of the pandemic and asked for people to tell us their lived experiences from April to June 2020.

It is clear that COVID-19 will not disappear overnight and as time goes on, the experiences of those classified as ‘extremely clinically vulnerable’ will change.

Therefore, we plan to conduct another study which covers a different timescale.

A staggering 824 people responded to this initial survey, significantly more than you would find in a clinical trial study. This is clear proof that people with PH want their voices and their lived experiences to be heard.

This report highlights the findings of the research and as well as statistics, we bring you the words of those who have been impacted in very different ways. Although some names have been changed, the words are real, and we are grateful to everyone who shared their stories.

Many people with PH already live restricted lives because of their illness, and time and relationships with others are extremely important. The pandemic has caused their already small worlds to shrink further.

We must learn from their experiences for future health emergencies and ensure that those with rare diseases like PH continue to access high quality care and support.

This is an important survey that captures the experiences of people with PH during an unprecedented time. I hope we all learn from it.

Iain Armstrong Chair of the PHA UK

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Contents P5

Participants

P6 The psychological

impact of the

pandemic P12 The physical impact

of the pandemic P16 Support during

the pandemic P23 A final word

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SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

Jayne Venables and her family took careful measures to keep themselves safe at home.

I was very concerned about the possibility of contracting COVID-19.

The first few weeks of the pandemic were very stressful. I was initially very scared of the virus and how it was spreading.

Although we live in a semi-rural area, we knew someone very early on that caught it (and recovered) so this made it very real. I took the decision to pull my daughter from school before the official lockdown started.

I found it very difficult because my 17-year-old son was still living in army barracks and I felt that I needed to protect my children.

I was very concerned about the possibility of contracting COVID-19.

All post was left for three days before opening. All surfaces and touch points were cleaned several times a day.

All deliveries were left outside for three days before opening and any shopping was wiped down. We were very determined that we would do everything possible to not contract COVID-19.

Shopping was a nightmare to begin with. The fight for supermarket delivery slots before we were recognised as a priority group was very stressful, and we had to stay up past midnight each night in the hope to get a slot.

But I started to relax as shielding continued. I watched the figures daily and read as much reputable information as I could. I felt that if I could educate myself as much as possible then that would be for the better.

I didn’t feel supported by the government in the early stages of the pandemic, and still don’t.

My [specialist centre] team, on the other hand, were fabulous.

I had phone calls from early on checking how I was and making sure I understood what to do to stay healthy.

I have continued to have frequent video appointments with them.

I feel that we are in this for the long haul, but I’ve learned that stressing about things out of my control is useless.

SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

Who are the people that responded?

35%

824

have Idiopathic Pulmonary Arterial Hypertension (IPAH)

total responses

of respondents were female

The average age was

59

years

74%

21%

years

7.7

The average length of diagnosis was

have Chronic Thromboembolic Pulmonary Hypertension (CTEPH)

18%

have Pulmonary Hypertension in association with Congenital Heart Disease

11%

have Pulmonary Hypertension in association with Systemic Sclerosis

15% ‘other’

My emotions range from being very practical to being frightened of my own shadow.

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SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

The psychological impact of the pandemic The first 3 months of the pandemic had a significant impact on people’s psychological wellbeing.

90%

of people with PH said their emotional or mental wellbeing has been affected by the pandemic. 31% said it has been affected ‘severely’ or ‘a lot’.

I felt incredibly guilty to the point of a panic attack that I could stay at home safe [whilst others] were out working and helping.

85%

said they felt anxious.

A third said they felt ‘extremely’ or ‘very’ anxious.

57%

said they felt panicked.

A quarter said they felt ‘extremely’ or very’ panicked.

66%

said they felt depressed.

A fifth said they felt ‘extremely’ or ‘very’ depressed.

58%

said they felt lonely.

A fifth said they felt ‘extremely’ or ‘very’ lonely.

It has been a lonely time but better to be safe in isolation.

SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

Alex Charlesworth, 30, lives in Kent and was starting a phased return to her teaching job when she was told to shield.

I feel my emotional and mental health suffered a lot more than my physical health.

After being diagnosed with PH in April 2019 I felt I was just starting to get back to ‘normality’ when this all happened.

It came at a really difficult time.

I live with my boyfriend and dog and during the initial few weeks of shielding, it didn’t seem too bad.

I made a timetable to keep myself busy, but it started to become tedious.

Not being able to go out for a walk was the hardest thing. Being in the house, I wasn’t able to move further than a few metres, so I was concerned about my physical fitness. I was also concerned about not being able to have the monthly blood tests I normally have because of my medication.

I feel my emotional and mental health suffered a lot more than my physical health though. It was more difficult when everyone else was able to start going out more and meeting up with people, but those shielding couldn’t.

I am very close to all of my family, so not being able to see them was really hard.

As time went on, I was concerned about what the government were going to say about shielding and how / when that was going to end or be relaxed. I felt quite anxious as the end of June approached because I didn’t know what was going to happen.

I do wish the government had addressed the people who were shielding a little bit more; I felt that we were left in the dark right up until shielding was meant to end.

I felt both excited and nervous when I was allowed to start going out again.

I am usually an active person and my friends and family got me through my diagnosis last year.

I needed to get out and about and catch up with friends and laugh and enjoy life again.

I feel I do have more of the feeling of ‘I’m only here once’ and I will always take precautions, but I am not going to shut myself away from life waiting for a vaccine that might never happen.

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SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

People with PH were more worried about loved ones contracting the virus than themselves.

89%

felt distressed about the fear of contracting COVID-19.

16% felt ‘extreme’ distress.

Not being able to see family and friends has had a big impact on my mental wellbeing.

93%

felt distressed about the fear of a loved one contracting COVID-19.

25% felt ‘extreme’ distress.

My mental and emotional state changes daily, like the tide coming into shore.

I have developed depression because of being confined indoors and not seeing friends.

Fear of declining health affected a significant amount of people.

74%

felt worried about their PH worsening during the pandemic.

My obsession with dying has reared its ugly head again.

62%

felt worried about their mental health worsening.

SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

People with PH felt distressed by the restrictions of shielding.

88%

felt distressed by missing loved ones.

Almost half felt ‘extreme’ or ‘much’ distress.

81%

felt distressed by being confined to their home. A third felt ‘extreme’ or ‘much’ distress.

63%

felt distressed because of loneliness. A fifth felt ‘extreme’ or ‘much’ distress.

66%

felt distressed by lack of access to grocery shopping. A fifth felt ‘extreme’ or ‘much’ distress.

I have looked at the bigger picture and isolation is better than the alternative.

I feel less self-conscious about restrictions on my activity [because of PH] as everyone else is also facing restrictions, but on the other hand, as lockdown eases that becomes more apparent.

I feel as though shielding people are being forgotten in the rush to get the economy back on track.

It is hard enough dealing with PH for 16 years and then this comes along.

The restricted life I had before has been severely curtailed.

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Viv Lloyd from Lancashire had been living with PH for just over a year when the pandemic began.

I think everything that’s happened has brought us closer together.

My partner Denise and I were in Singapore, about to go on a cruise we had been planning for two years, when we realised how serious the situation with coronavirus was going to be.

We cancelled the holiday and flew back home, and within weeks shielding and lockdown began.

It was a shocking thing and at the start I never dreamed it would go on as long as it has.

Fortunately, we have a lovely garden and a greenhouse so we were able to spend time outside and go walking locally where it is very quiet. We were blessed in that respect.

However, there were times when I felt bad. It did get me down. It was the restriction of not being able to go out and do ‘normal’ things.

Denise and I used to spend a lot of time as volunteers, visiting hospitals with our Pets As Therapy dog, and not being able to do that has upset us both a lot.

I think everything that’s happened has brought us closer together as a couple.

Denise is over-cautious about me, because she wants to look after me, but we talk it through and we really need each other.

I feel like what’s happened has made me a more positive person.

My PH means I get tired very easily and have muscle pains but I don’t keep

thinking about what might happen – I just accept this is the condition I have and I want to make the most of what I’ve got.

Denise’s experience

From my perspective, lockdown starting was actually a big relief. We had been isolating since before we were told to, and at times I felt I may have been over-protective of Viv, so being told what to do meant I didn’t have to make a decision or judgement call. And everyone had to follow the guidelines, so it didn’t feel like we were missing out on anything.

It was a really nerve-wracking thing to go out because in those early days it was quite frightening – you didn’t understand the risks properly.

There was a time where Viv started to struggle and started to feel a bit isolated. But one thing that helped us during lockdown is the neighbours and the community spirit that we’ve developed. We all danced on our doorsteps every Sunday and have helped each other out, leaving cakes on doorsteps and so on. There are definitely some positives that have come from all of this too.

SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

“Total isolation” “It has made my illness define me more”

“It’s very lonely”

“I feel forgotten – shut up, safely out of sight and mind. And I’m frightened”

“I am scared of going outside and dying alone”

“I feel I’m in a forgotten group”

“Acute isolation, feel imprisoned and depression”

“I am very weary”

“I feel cut adrift” “Those shielding feel like the forgotten people” “At the start of the pandemic I felt abandoned”

“Everything has seemed a battle” “I feel swept under the carpet”

“I feel blessed to have had quality time with my family and make a bit of room in my mind where things were getting fuzzy.”

“I have been very lonely and found that very hard to deal with” “I feel isolated, forgotten about, lonely and guilty” “I felt like the house was closing in on me”

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SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

The physical impact of the pandemic My biggest struggle was having to ask for help.

At one point I was happy to go without some medications because I didn’t want to ask, again, for someone to go and pick them up for me.

47%

Almost half (47%) of people with PH said their physical health worsened during the first 3 months of the pandemic.

36% 27% 20%

said they lost fitness

said they gained weight said they felt the effects of sleep deprivation

Because we’ve not been able to have anyone in the house to clean we have had to do more ourselves and have suffered more from arthritis.

As a parent with PH having to homeschool my son has had a negative impact on my physical and mental health.

PH symptoms also worsened for many.

29% 30% 11% 7% 11%

reported increased breathlessness reported increased fatigue

reported increased dizziness or fainting

reported increased chest pain reported increased swelling

SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

I felt life could end immediately, especially at the beginning when the news kept reporting if you have underlying health conditions you will probably die and not get the use of a ventilator.

Previously very active, Judy Bugg saw her physical health severely affected by shielding.

I struggled asking for help.

As well as PH I have other lung conditions too, and my husband has cancer, so we started shielding early.

I felt vulnerable, which I have never felt before. I’m very independent and I struggled asking for help. When I needed to post a letter, but couldn’t even go out to do that, I broke down.

I felt as though everyone else was living their lives and I was living in a box. Physically, I was very much affected.

Despite needing oxygen to walk with, I usually walk and go to the gym, but [because I couldn’t go out], it got to the point where I could hardly walk to the bathroom without getting totally out of breath. I got to a point where I said, ‘I don’t want to go on like this.’

I didn’t know who to contact. I saw a nurse for blood tests and she just said, ‘everyone is in the same boat’.

My specialist centre put it down to me not being as active as normal and I got very down.

My son and daughter were brilliant.

I phoned my daughter several times in floods of tears and she really helped me. A friend helped me discover a new painting hobby which made a difference too. And I’m now working hard to get back to the fitness level I was at before.

The last few months have seen roles change within family. I have four children, and everyone has always come to me for support. I feel I have lost that place. But I know I need to let it go and accept the change of roles.

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SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

Harika*, 33, is a single mum with pulmonary hypertension, living in the East Midlands. Her 5-year-old son has autism and during lockdown she had to rely on food banks and charity support.

I’m a single mum with PH and an autistic child and I felt no-one was helping me.

For me, the pandemic has been an absolute nightmare. I feel like I am really suffering.

I’ve been on my own for a few years after I split with my son’s father, but he still used to come by and help with things like the shopping and cooking.

Because of my PH and my son’s autism, looking after him on my own is very hard so when lockdown began I begged school to take him so I could have some respite. I even got a social worker involved but we couldn’t get anywhere with it. We had no choice but for my partner to move back in as I couldn’t get help from anywhere else.

I honestly thought I would die otherwise, by burning myself out having to deal with everything myself 24 hours a day. But that meant he had to give up his job so he could shield with me, so I was supporting us all on just my benefits.

I tried to get on the government help scheme but

despite trying a few times I never got a response.

Emotionally there were times I felt like just ending it because I just couldn’t take it.

My mental health challenges existed before the pandemic – because of my diagnosis and processing the shortened life expectancy – and being stuck in through lockdown made it all worse.

Trying to explain to my son, who has autism, that he couldn’t go out was horrendous. And with no respite it’s been absolutely horrendous.

Six weeks into lockdown my partner moved out so he could start working again and I had to do everything myself.

My physical health and mental health definitely suffered. I was so tired.

There was no rest and no break; because of my son’s problems he needs 24 hour care. I have no family and no support network.

Even though I should have been shielding, I had no other choice but to go out to a supermarket because I wasn’t getting government food parcels. Because my son can’t walk round with me, I had to lift him into the trolley, which would leave me gasping for air for ten minutes afterwards.

Strapping him back into the car again was equally hard. He would

SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

start screaming ‘mummy wake up’ as he couldn’t understand why I was sitting with my head down, trying to breathe.

Going to the supermarket, I would be in tears because of the fear of catching coronavirus and dying. I knew I shouldn’t have been going out, but I had no choice.

I feel like I’ve been let down in every single way. It was a living nightmare.

I cried every single day.

I’m a single mum with PH and an autistic child and I felt no-one was helping me.

Eventually, my social worker put me in touch with a local charity and they delivered food to me from a food bank.

It was a godsend. They also put me in touch with a woman who also has an autistic child so I had someone to talk to.

My garden was unsafe for my son to play so they got someone in to clear it and my cooker broke so they helped me replace it.

The first time they came with food I sat and sobbed. I was so grateful. Their kindness meant so much. There were sweets for my son, and it meant the world.

I couldn’t believe I was needing help from a charity though. It was embarrassing.

I felt inadequate as a human being.

It was degrading. I couldn’t do what other ‘normal’ mums do without help.

And I wasn’t getting any help before the charity stepped in.

*Names have been changed

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My breathing improved [during lockdown] because fewer cars and buses meant less air pollution.

At the start I was equally concerned for both my mental and physical health.

Because I couldn’t leave my house I didn’t need my wheelchair, which was very good for my morale!

I was too scared to even step foot outside my door or go near family.

At the start I couldn’t get food deliveries and I felt I had a choice between dying of starvation or of COVID-19. I was in a very bad place.

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SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

Support during the pandemic Support from specialist centres

64%

of people with PH rated the support from their specialist centre as ‘good’ or ‘excellent’ during the first 3 months of the pandemic.

88%

felt they were able to contact their team with questions or concerns about their PH during this time.

I am proud of how I have handled myself through this.

I was managing living on my own but now I have lost confidence.

84%

felt they were able to contact their team with questions or concerns related to the pandemic during this time.

96%

of those who had a telephone or video consultation in place of a face-to-face appointment said they were satisfied with the experience (73% said they were ‘very satisfied’).

Rebecca* has 6-year-old twin daughters, one of whom has PH. The family live in London.

I was so worried about something happening to her.

The first few weeks of shielding were really difficult. As well as pulmonary hypertension Erin* also has severe reflux and eating challenges, and with the problems with grocery deliveries, getting the right food for her was quite hard.

In hindsight, I think I would have just put a mask on and gone to the shops for her. But at the time I was so worried about something happening to her. She’s very slight, there is not much to her, and she can’t tolerate very much.

We are lucky to have a ground floor flat with a garden for exercise, but it was hard to get the right kind of exercise for someone with PH.

We played swing ball, did Tai Chi together and used a dance app, and Erin would dance at her own pace.

Both girls want to be astronauts so we spent a lot of time during lockdown learning about space, baking, and doing lots of nice things that you wouldn’t normally have chance to do.

It helped Erin to have her sister during lockdown. It would have been so sad for a child on their own.

I don’t think Erin’s physical health suffered too much from shielding. But if it had happened during winter it would

*Names have been changed

have been a different story, because getting out in the garden helped keep her fitness ticking over.

I was worried because we couldn’t have our normal heart scans. Erin began a new medication at the start of the year, and we couldn’t have the scans to make sure it was working as it should be. That was a worry.

She has to have regular blood tests too and it was nerve-racking having someone coming into our home to carry them out.

This whole experience has made me realise that as a family we need more people in our lives. We don’t have a lot of friends, and my extended family and my husband’s extended family are in other countries.

When you have a child who has PH, that in itself is a big thing to live with. Even with all the challenges of the pandemic, the hardest thing for me was before all this - being told that PH isn’t very good for life expectancy.

We are worried how Erin will cope if she catches something, but it’s something we have to live with. It’s about trying to find the happy moments and keeping our spirits up

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SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

Being labelled ‘vulnerable’ is a strange term.

I feel I’ve lost my freedom to do a lot, even though I’m relatively healthy.

It’s all very well looking after people’s physical health, but not at the cost of their mental health.

Paula Massie lives in Scotland and was about to return to work following a double lung transplant when the pandemic began.

I had time to focus on getting stronger.

At the beginning it was really scary.

There were a lot of unknowns and as well as me not being able to return to work, my husband was furloughed so that did affect us financially.

It was hard seeing transplant recipients at the top of the list of people who are extremely vulnerable. It played on my mind.

However, I actually felt like lockdown had a big improvement on my mental health as many pressures, particularly linked to my foster son and his school, were taken away. I had time to focus on getting stronger from my transplant, so I’d say my physical health improved too. Life was just less stressful.

There are many folk who just want to get back to ‘normal’ but I think for

people with certain health conditions like PH, being locked in wasn’t really a change for us. It was kind of our lives before all of this. I think our view of normal is slightly different.

Because I’ve had a transplant, infection risk is something I have to think about all the time anyway - whether it’s coronavirus, flu or any other bug. To me the COVID-19 ‘rules’ are nothing new.

I do feel frustrated though as now I’ve been given a second chance with a lung transplant, I want to be able to go out and do more things. At the end of the day somebody has died to give me my lungs so I want to make sure I don’t waste life.

SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

Support from the pha uk

65%

of people with PH rated the support from the PHA UK as ‘good’ or ‘excellent’ during the first 3 months of the pandemic.

The PHA UK activities which members found ‘extremely’ or ‘very’ useful.

*Percentages taken from those who reported accessing the information, resource or support service

Wellbeing journal (for adults) ‘Corona Chronicle’ (for children)

Infocasts

Information pack

Email support

Telephone support

Social media

Information provided by the website

98% 97% 88% 94% 98% 95% 93%

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SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

Being stuck indoors all the time with not even college as an escape has taken a toll on me and my depression.

I know I cannot control any actions apart from my own.

Relying on others so much is hard.

[The pandemic] has made me feel vulnerable for the first time since being diagnosed with PH. I haven’t felt lonely or isolated because I live with my husband and two sons and we have a great garden. I know others aren’t as fortunate.

Paula Hartley lives in Sheffield and had a good experience of shielding.

I didn’t feel frightened.

During shielding I actually felt more in control of my life and felt good after the first couple of weeks. My husband was furloughed so he shielded with me and my son went to stay with his sister.

The only bit that unnerved me was when I read or heard that people with underlying conditions would not be admitted to hospital as they wanted people who had a better chance of recovery to be admitted.

I kept going physically and we did a lot in the house. I got organised and made a list; it was a lovely feeling and I worked through about 60 things.

I didn’t feel frightened.

I stayed shielding until the week before the last clap for the NHS. I felt like I was doing something wrong the first time I went to a supermarket – as if I had escaped from prison!

SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

Other support

51%

of respondents rated the support from their GP as ‘good’ or ‘excellent’.

80%

rated the support from their medication delivery service as ‘good’ or ‘excellent’.

Paul Harris lives in Coventry and was furloughed on full pay whilst shielding.

I feel very fortunate.

The first few weeks of shielding were sketchy. I was repeatedly experiencing high temperatures but told there was nothing that could be done – just to seek hospital treatment if things got worse.

I worked from home for the first two weeks but was then furloughed, luckily on full pay.

I missed socialising and going to the shops, but I spent a lot of time tending our allotment and that meant my exercise levels didn’t change.

In April I was admitted to hospital with pneumonia and that was quite unnerving. Being on a ward with other people when I had been shielding was scary.

There were a couple of days during lockdown when depression hit me straight in the face and there was one random day when I felt really anxious, but on the whole I’ve been ok.

I feel very fortunate. My physical health has never been better, and I have a job on full pay even though I am furloughed. I have excellent support and the outdoor space I can access by having a garden and allotment is everything to me.

If I had been in a flat on my own, with my previous mental health issues I think I would have been suicidal.

My anxiety levels are helped by my PH being stable but if I feel myself getting down I will access counselling.

I felt there was very strong leadership from the government at the beginning and I really respected their decisions, but now the trust has gone.

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SHIELDED VOICES: Lived experiences during the early stages of the COVID-19 pandemic

“Warts and all” Written by Margaret Porter, who lives with PH, whilst shielding

Home’s where the heart is or so it is said.

Somewhere to relax and go lay down my head.

But these chains are restricting I want to break free, I’m a sociable person, I enjoy company!

Each day is a new day but I must remain, on lockdown, I’m shielding, so I must refrain, from going out shopping or meeting my friends.

I can’t see my family, I hope this will end!

Twelve weeks and counting since Covid-19 I’m trying to look forward and not where I’ve been, but confusion, frustration and sadness I feel And at times I’m complacent, things are a big deal!

I try to be cheerful, I laugh and I’ve cried.

When I get low I think of all those who died.

I hope I’ll get through this I wanted to share that, I’m really so thankful to all those who care.

My sons do my shopping, or I buy things online.

Friends, family and colleagues check to see if I’m fine.

Instead of the office I now work from home, Which is new and fulfilling but I still feel alone.

I’ve revamped the garden and read lots of books.

I’ve completed work challenges and I’m learning to cook!

Researching oil paintings is a new thing for me.

It has given me a purpose to explore their stories.

I’m bored of the telly, I know that I moan.

My dog’s my companion and so is my phone.

I tire quite easy when I’m not at my best, so my oxygen’s humming, I think I’ll take a rest.

Margaret Porter has Chronic Thromboembolic Pulmonary Hypertension (CTEPH) and works part-time at an art museum. She continued to work from her home in Blackburn whilst shielding alone.

Work was a saviour for me.

Work was a saviour for me during the shielding period. I really don’t want to think about how awful it would have been without it. It got me out of bed and gave me a routine, and knowing the income was still there really helped too.

We had team meetings via Zoom and were set weekly creative ‘challenges’ – which introduced me to writing poetry.

When I was feeling low, putting words down on paper helped me.

I have lots of grandchildren and a great-grandchild, and seeing them was a very big part of my life, so it’s been really hard in that respect. I’m a sociable person and going out for meals, laughing around the table, is something I really miss.

A final word

Dr John Wort, Chair, UK Pulmonary Hypertension Physicians Group

It is clear that the physical and mental impact of the coronavirus pandemic has been enormous for people with PH.

It makes their sacrifice in shielding even more incredible, and as healthcare professionals we are truly grateful for the protection it afforded the NHS. We must learn from all of the experiences shared in this report. COVID-19 won’t disappear quickly and perhaps we will all end up working in a mix of differing ways from now on. It was encouraging to see that most people had good

But growing up, I was always taught to just ‘get on with it’, not to mope about, and that’s how I’ve always been. That mindset has helped me through the last few months, along with a brilliant circle of family and friends who made sure I was ok. I had lots of offers of help and I know they were genuine.

When it comes to the fear of contracting the virus, I think I’m a bit of a realist.

If it’s going to happen it will. I do take precautions; I wash my hands a lot, I don’t take public transport anymore and I’m very aware of keeping a distance from people.

But when it’s my time to go, I’ll go.

I started going back to work again when the museum opened, after asking my specialist for advice.

It did my mental health a lot of good to be back there working.

experiences with virtual clinics run by their specialist centres, but we need to ensure that we still provide the exceptional care that people with PH deserve. And we need to focus even more on mental health and exercise.

Despite the tremendously difficult time most people have experienced, there are learnings we can take from this very important piece of research.

Together, we can ensure that those with PH have the best quality of life possible – no matter what the circumstances may be.

Hope is the sunrise at the start of the day.

Hope is the butterfly heading my way.

Hope is the birdsong so happy and strong.

Hope is the feeling you get from their song.

Hope is the rainbow its bright colours shine.

Hope We all need to hope, soon things will be fine.

Written by Margaret Porter, who lives with PH, whilst shielding

Copyright to the PHA UK. No part can be used without

prior permission nor used without appropriate permission that the PHA UK were the originator for the data.

Registered Charity No. 1120756. Published November 2020.

www.phauk.org