1000 Voices: Living through the pandemic with PH

ph + thec pandem

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VO CES The lived experiences of the UK’s pulmonary hypertension community during the COVID-19 pandemic April 2020 to July 2021 inclusive

A wider picture As the PHA UK’s second survey into the impact of the pandemic on people affected by PH, this piece of research set out to capture wider experiences over a longer time period.

In the summer of 2020, our ‘Shielded Voices’ survey asked about the impact of the first three months of the pandemic, from April to June of that year. It focused primarily on experiences of shielding, and asked questions only of people with a diagnosis of pulmonary hypertension.

This second stage of our research, conducted in early summer 2021, set out to paint a more detailed picture.

Using three separate surveys, we asked patients, loved ones, and parents / guardians too, about the impact of the pandemic on many different areas of their lives. We asked for experiences over a 15-month period from the beginning of the pandemic in early 2020, to the summer of 2021.

This was a period of time punctured by lockdowns, shielding instructions, and the roll-out of vaccinations.

It was a pivotal point of history that affected the PH population in many different ways, as this report shows.

We will be using this data, and future research, to engage with NHS services and commissioners to ensure that the needs of patients and their kinship are met.

We will be digging deeper into the statistics presented in this report in 2022. With in-depth interviews and further analysis planned, we will ensure that lessons are learned, and the PH community is heard, as we rebuild after COVID-19.

We are immensely grateful to everyone who took part in this important research.

Iain Armstrong

Chair of the PHA UK

Contents P5

The experiences of people with PH

P15 The experiences

of loved ones P20 The experiences of

parents/ guardians

of a child with PH Read our earlier report into lived experiences during the early stages of the COVID-19 pandemic, at www.phauk.org You can also email office@phauk.org to request a copy.

Key findings

58%

of people with PH said their physical health worsened as a result of the pandemic.

43%

of people with PH said they had experienced new symptoms of anxiety since the start of the pandemic.

I do not go out much anyway so shielding didn’t make a lot of difference to me.

OVER 100 RESPONS 0 ES RECEIVED

47 87 %

of people with PH said they found it difficult or very difficult to access support from their GP.

%

of people with PH said they found it easy or very easy to access support from their specialist PH centre.

62% of those who live with someone PH describe themselves as an ‘unpaid carer’.

78% of parents / guardians said their child with PH has found the pandemic difficult or very difficult.

1total ,074

responses

730

were patients (68%)

307

were people who lived with someone with PH (29%)

37 To put life on hold was a very big thing for me to accept and get my head around

were parents or guardians of a child with PH (3%)

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

THE EXPERIENCES OF

PEOPLE WITH PH

5

6

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

Respondents had the following types of PH:

70%

of respondents were female

Other

Unsure

PAH in association with systemic sclerosis

PH in association with congenital heart disease

CTEPH

IPAH

30% 24% 20% 11% 9% 7%

11%

had received their PH diagnosis during the pandemic (after March 2020)

Shielding experiences

88% ‘fully followed’ shielding advice during the 1st lockdown.

(10% ‘partly followed’)

76%

68%

‘fully followed’ shielding advice during the 2nd lockdown.

‘fully followed’ shielding advice during the 3rd lockdown.

(20% ‘partly followed’) (27% ‘partly followed’)

felt they 91% personally needed to shield.

hought 92% tshielding was the right thing to do.

I feel that I’m here, alive and well, due to isolating away from others

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

7

Physical health during the pandemic

58 66

%

said their physical health worsened as a result of the pandemic.

(12% said it worsened ‘a lot’, 46% said ‘a little’)

%

said their general health worsened as a result of the pandemic.

(14% said it worsened ‘a lot’ 51% said ‘a little’)

I have put on a lot of weight, that is partly due to eating too much, as if ‘its lockdown, eating does not count’. I need to lose weight but have no motivation to do so.

77%

23%

46%

said they lost weight as a result of the pandemic. (6% said they losts ‘a lot’, 17% said ‘a little’)

said their fitness or physical activity levels worsened as a result of the pandemic. (35% said it worsened ‘a lot’, 42% said ‘a little’)

said they gained weight as a result of the pandemic.

(14% said they gained ‘a lot’, 32% said ‘a little’)

8

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

Motivation to look after general wellbeing

27

%

said the pandemic has made them pay more attention their nutrition / what they eat

My general health and PH have worsened only because of the lack of exercise

4% 6%

said it has made them want to take their PH medications more frequently

said the pandemic has made them feel there is no point in looking after their health and wellbeing

34%

said it has made them want to get more active or exercise more

38%

said the pandemic has made them pay more attention to their mental wellbeing

I take my health and wellbeing very seriously and have made sure I exercise regularly by walking

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

47

Access to healthcare %

Repeat prescriptions were difficult to get hold of during some parts of the pandemic

87 %

of people with PH said they found it difficult or very difficult to access support from their GP.

25

9

said they found it easy or very easy to access support from their specialist PH centre.

%

said they had missed medical appointment/s since the start of the pandemic. Of these people, 17% said they had missed three or more.

Accessing GPs has been a complete shambles.

My PH centre has been fantastic, especially my specialist nurse.

I felt telephone consultations were ineffectual and a waste of clinician and service user time

The reasons given for missing appointments included:

11% said they didn’t want to 3% use public transport they were worried about the level of 4% said safety precautions / cleanliness at the venue 3% said they felt too unwell to go said they were worried about being around people

Reasons given in the ‘other’ field included surgery / hospitals cancelling appointments, GPs not taking bloods, and patients being advised by hospital / surgery not to attend.

10

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

5%

said they believe they had COVID-19 but didn’t get tested

15%

of those who tested positive required hospital treatment (but no-one needed ventilation)

98%

In early summer 2021, at the time of completing the survey,

of people with PH had received both parts of their COVID-19 vaccination.

*Source:https://www.england.nhs.uk/statistics/ statistical-work-areas/covid-19-vaccinations/covid-19vaccinations-archive/

4%

said they tested positive for COVID-19

As of 31st July 2021, 57% of the whole of the English population had received two doses of the vaccine.

Experiences of COVID-19

Mental and emotional health during the pandemic

22 %

of people with PH said they had experienced new symptoms of depression since the start of the pandemic. 6% have accessed treatment for depression for the first time since the start of the pandemic.

10%

said they had started experiencing panic attacks since the start of the pandemic.

3% have accessed treatment for panic attacks for the first time since the start of the pandemic.

43 %

said they had experienced new symptoms of anxiety. 8% have accessed treatment for anxiety for the first time since the start of the pandemic.

The pandemic has made me feel very isolated I feel very different and sad, but the overriding feelings are anger, resentment & frustration

44

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

11

%

said the restrictions on everyday life imposed by the pandemic did not make much difference to their lives. 46% said they found the restrictions difficult to live with, and 10% said the restrictions had made their life easier.

Being classed as clinically extremely vulnerable

22%

said that being classed as clinically extremely vulnerable made them more aware of being ill or ‘different’.

66% to be protected.

said they did not mind as it enabled them

6%

said it made them worry more about COVID-19 and how it might affect them.

2%

said it made them feel angry.

The pandemic has definitely increased the anxiety I have battled with throughout my life.

I feel I have lost my confidence, and I get worried and depressed easily. I’m afraid of my ability to talk to people again.

I’m still paranoid, but more resigned to it.

I made a deliberate conscious choice to come out of the [pandemic] situation in a better state than when I started.

The pandemic has created uncertainty and fear which fuels the sense of anxiety and loss of control over my life.

The main impact for me has been mentally - especially trying to shield whilst having a child at school, which made me isolated from my own family at times.

12

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

Behaviours during the pandemic

10

I’ve enjoyed increased accessibility to online groups and learning during the pandemic.

A lot of technology is beyond my ability

%

said they have drunk more alcohol since the start of the pandemic. 11% have drunk less, and 36% said their drinking habits have not changed. 37% don’t drink (and didn’t before the pandemic).

18%

say they eat more healthily now (since the start of the pandemic)

16% say they eat less healthily.

1%

said they have smoked more cigarettes since the start of the pandemic. 1% said they have given up since the start of the pandemic.

96% don’t smoke (and didn’t before the pandemic).

Online shopping was a lifeline.

Learning to use Zoom and following online streaming has been life-enhancing.

Internet usage and technology

66%

said they have used the internet more since the start of the pandemic (of which 37% said ‘a lot’ more). 31% said their usage has not changed and 2% said they use it less.

81%

said they find it easy or quite easy to use the internet or online technology. 19% said they find it difficult or very difficult.

23%

said they are now more confident in using the internet and online technology (since the start of the pandemic).

3% said they are less confident, and 74% said their confidence levels have not changed.

83%

said they do not expect their internet usage to change over the next 12 months.

12% said they expect to use it less and 5% said they expect to use it more.

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My anxiety has got worse with the ever-changing situation and drama-filled news coverage.

pandem c

While the label of ‘clinically extremely vulnerable’ has protected me, it has also allowed people to direct their abuse toward me.

[The pandemic] has validated my thoughts on being a burden.

I appreciated being classed as clinically extremely vulnerable as it has helped me to protect myself I think it was correct to ask clinically extremely vulnerable people to shield but I feel little was done by the government to accommodate us as they eased restrictions.

14

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

The future

51 45

Responses given June/July 2021

%

said they felt good or very good about normal life resuming.

%

said they felt worried or very worried.

I feel less positive about the future because of government interference in our life

28

20 %

said they needed psychological or emotional support

8%

said they needed medical support to re-engage with ‘normal life’ post-pandemic

20

%

said they needed practical support

%

said the pandemic has made them feel less positive about the future.

7% feel more positive, and 37% said they are not sure how they feel about the future. 28% feel no different.

I feel I have lost most of the rest of my life.

I want to live for today and worry about tomorrow when, and if, it becomes today

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

LOVED ONES THE EXPERIENCES OF

15

16

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

We asked for this survey to be completed by people who lived in the same house as someone with pulmonary hypertension. Parents and guardians were asked to complete a separate survey (see p20).

‘Other’

Different type of relative

Sibling

Son or daughter

Spouse or partner

Who responded?

81% 5% 3% 8% 3%

10%

of respondents are classed as clinically extremely vulnerable themselves

62%

said they would describe themselves as an ‘unpaid carer’

38 %

The worry around my spouse has caused me to develop mental health issues. I am currently suffering with OCD which stems from all the worrying about keeping her safe due to her PH

said the restrictions on everyday life have not made much of a difference to their life.

61% said they have found the restrictions difficult and 7%, said the restrictions have made their life easier.

17

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

37

60

%

%

of respondents said they had to go out of the house to work during the pandemic (of which 22% said they had to ‘often’)

Of those who had to go out of the house to work, 60% said it caused them a lot of worry.

(33% said it caused them ‘some worry’)

It’s refreshing to be asked, as a spouse, about the effects of covid

We asked respondents how they thought the person they live with (with PH) has felt about the restrictions on everyday life.

This is how the responses compare:

Loved one

7 %

10 %

61 % Loved one

43 % Patient

Loved one

32 %

"The restrictions have made their life easier"

Patient

"The restrictions have not made a difference to their life"

"They have found the restrictions difficult to live with"

44 % Patient

I gave up my part-time job due to worries for my husband

As a carer I am struggling with my own mental health.

I have had zero support, zero respite and zero independence

18

34

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

%

of respondents said they feel the PH symptoms of the person they live with have worsened since the start of the pandemic.

22

28

I work in a care home and it caused me a great deal of stress going to work every day, worrying I would pass the virus on to my husband. Due to the worry I came out in shingles and had to have time off work

43

%

of respondents said they feel other health conditions of the person they live with have worsened since the start of the pandemic.

34 %

of respondents said the person they live with has shown symptoms of depression since the start of the pandemic.

%

of respondents said they feel the general health of the person they live with has worsened since the start of the pandemic.

%

of respondents said the person they live with has shown symptoms of anxiety since the start of the pandemic.

My sister [with PH] had covid and came through it better than the rest of the family

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

46 %

said they feel good or very good about normal life resuming. 48% said they feel worried or very worried.

62

19

I love him dearly but lockdown has been hard for both of us. Caring with no respite is difficult.

%

of respondents said they have felt ‘extremely concerned’ about the person they live with (with PH) contracting COVID-19. 23% were very concerned, 12% were concerned and 3% were a little concerned.

There are very few opportunities to offload anxieties when other people often have their own problems to deal with

4%

of respondents said the person they live with has shown symptoms of another mental health condition since the start of the pandemic.

My own mental health has plummeted [in terms of] loneliness, anxiety and depression.

I view others now as threats rather than potential friends

THE EXPERIENCES OF

PARENTS & GUARDIANS OF CHILDREN WITH PH

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

21

70% 30%

Who responded?

Said their child with PH is male Said their child with PH is female

14%

said their child received a PH diagnosis after the pandemic began (after March 2020)

78 %

said their child has found the pandemic difficult (of which 35% said ‘very difficult’)

In some ways my daughter has thrived and in some she has struggled

The pressure of having such a unique, vulnerable child is extremely overwhelming at times, something I never really felt before the pandemic

14 92 %

said their child has not found it difficult and 8% said they have ‘thrived’

%

of parents / guardians said they have found it difficult themselves (of which 49% said ‘very difficult’)

22

1000 VOICES: The lived experiences of the UK’s PH community during the COVID-19 pandemic

The first lockdown was the hardest

Parents / guardians ranked the following order of what has caused them the greatest distress during the pandemic:

1 2 3 4

Fear of the child contracting COVID-19 (71% ranked this top)

st nd

rd th

Worries about the child’s mental / emotional wellbeing (12% ranked this top) Worries about the child’s PH / other medical conditions (9% ranked this top) Worries about the child missing school (9% ranked this top)

This is how parents / guardians rated the support from their child’s specialist PH team throughout the pandemic:

16 27 16 16 16 8

%

said it has been

outstanding said it has been

excellent

% % % %

%

Our school was fully supportive and facilitated a lot of online interaction (and teaching) through the pandemic

said it has been

very good

said it has been

good

said it has been

acceptable said it has been

poor

This is how parents / guardians rated the support from their child’s school throughout the pandemic:

30 11 11 16 3 11

said it has been

outstanding

%

% % %

%

%

said it has been

excellent

said it has been

very good

said it has been

good

said it has been

acceptable said it has been

poor

16% said their child does not go to school and 3% didn’t reply.

Life is easier as I don’t have to explain why I’m staying in I am surprised how anxious I am about getting out and about again

Since covid, I feel like I lost my identity a little

I feel I was forgotten about

The pandemic has given me motivation to get out and pursue the career I’ve always thought I couldn’t do

I don’t like how people say, ‘they died but they had underlying health issues’, like that makes it ok

Everyday life has changed dramatically and I am not sure where it will end

ph + the

pandem c

We are very grateful to the 1,074 people who shared their thoughts and experiences for this important survey.

If you have any questions about this report, please email office@phauk.org or call 01709 761450 www.phauk.org Registered Charity No. 1120756 Published December 2021