Hi,

Today’s post will be a little different, I’ve teamed up with Biology Beth, a British Heart Foundation funded PhD Researcher. We’re both very passionate about the British Heart Foundation (BHF) and thought it would be a great idea to tell you why.

This blog post will be done as a collaboration, so please sit back and relax and hopefully you’ll learn some cool science things from Beth and I’m here because I bring some info around what it’s like to live with a heart condition.

Let’s get going….

Why are we doing this?

We want to raise awareness for the British Heart Foundation and discuss our passions for such an amazing charity.

This blog post came about because I wanted to do something to raise money for the British Heart Foundation during this period of uncertainty we are going through with COVID-19. I started by drawing pictures on my iPad and posting them on Instagram and Twitter. I’ve got to £125 and I’m very happy. If you would like to donate please go to my Just Giving Page and help to support the BHF.

I then talked to my friend Beth and we were discussing the impact COVID-19 is having on the charity sector and on research which affects lives.

We thought it might be a good idea, considering Beth’s PhD project is funded by the British Heart Foundation to talk about who the BHF are, what they do and why we support them.

Who are the British Heart Foundation and what do they do?

The BHF are a non profit charity, who’s singular aim is to Beat Heart Break forever. One in four of us here in the UK and one in three of us globally will die from Heart and Circulatory Disease. That’s pretty significant. The BHF is the biggest independent funder of Heart and Circulatory disease in the UK.

The British Heart Foundation says “Our research, is the promise to protect the people we love. Our parents. Our brothers. Our sisters. Our grandparents. Our closest friends”.

Key Statistics

Today in the UK:

27% of all UK deaths are caused by heart and circulatory disease.

But its important to note how far we’ve come

Today in the UK:

460 people will die from a heart attack or circulatory disease.

More than 120 people will be younger than 75.

7.4 million people are living with heart or circulatory disease.

280 hospital admissions will be due to a heart attack.

180 people will die from coronary heart disease.

13 babies will be born with a heart defect.

When reading these numbers, as  person who was born with Congenital Heart Disease, it’s very difficult because you see yourself as number on a page. But that’s another reason why I wanted to do this with Beth, because I am not just a statistic, I am the person writing these words you are reading.

If you would like to check out the latest research by the BHF check out this link: Our Research.

A heart stitched back together.

Q&A with a BHF researcher

I think while these might seem like a lot of facts and statements it’s important to remember the reasons why people chose to support the British Heart Foundation in so many ways. Which is why I asked Beth if she wanted to do this Q&A with me.

Philippa: Why do you support the BHF?

Beth: I support the BHF as it’s very close to my heart, I lost my grandad to a heart attack and whilst I was at uni my dad also suffered major heart attack. My dad’s rehabilitation involved lots of information from the BHF and aided his recovery.

Philippa: Why is it important to donate?

Beth: BHF are committed to their campaign to beat heartbreak forever. Donations help to fund major medical research and support BHF staff (those that work in the BHF shops and head office). For every £1 donated, 70p goes to funding our lifesaving work. Without medical research we can’t beat heartbreak forever so donating to the BHF is vital.

Philippa: Beth, what is a PhD?

Beth: A PhD (doctorate of philosophy) is a postgraduate doctoral degree, which is awarded to students who complete an original thesis that offers a significant new contribution of knowledge to their field. In the UK, a PhD project is typically 3-4 years full time and 5-7 years part-time. A PhD project is quite a commitment and it’s definitely not easy, but it’s also not as bad as people say, or at least it isn’t in my experience.

Philippa: What is your BHF funded research project?

Beth: My project is in the field of platelet biology in the context of cardiovascular disease. Platelets are important cells in the blood that contribute to clot formation in incidences or vascular injury. During cardiovascular disease we get unwanted platelet activation resulting in clot formation that can lead to events like hearts attacks or stroke. My project is looking at how platelet inhibitory pathways can alter platelet function in cardiovascular disease.

Philippa: What are your research goals?

Beth: My research goals are to finish my PhD in which my funding runs out December 2021 but I have until Dec 2022 to submit my thesis. I’d love to continue the research in the lab I’m currently in, I enjoy the research and I really like the people in my group. My supervisor has given me a lot of support and training to gear me up for a post-doctoral position. Following post-doc positions I’d like to write my own research grants to continue the work to hopefully one day run my own research group (a girl can dream, right?).

Philippa: What happens when you apply for a research grant?

Beth: I’ve never applied for a research grant myself as I’m only a student but I do know that research grants take a long time to write. The funding bodies such as the BHF have certain criteria for what they will fund and they will only fund research that will have the greatest impact. When you submit your application, it goes through rigorous rounds of review which can take a while and you may have to resubmit based on grant reviewers comments. A lot of grants can be rejected on the first round, so it can take 2 rounds before a grant is accepted. Once the grant is accepted it will have a specified start date and end date, with progress reviews throughout the course of the grant. This is to make sure you’re on track with the research and that there is appropriate output from the work i.e. publications etc.

Philippa: Why is heart disease such a big problem?

Beth: 7.4 million people in the UK live with heart or circulatory disease and 1 in 4 people die from heart or circulatory disease. That’s why BHF are targeting the world’s biggest killers – meaning that their work in funding research is vital in order to save lives and reduce those numbers.

Heart disease can lead to heart attacks, angina and strokes which if serious enough can result in death. These cardiac events can be a high burden on the NHS, research for better, more targeted treatments with fewer side effects along with preventative measures could help to reduce those numbers.

There are many risk factors such as smoking, stress, alcohol, high blood pressure, high blood cholesterol, physical inactivity, being overweight or obese, diabetes, family history of heart disease, age, sex and ethnic background. Also, having a heart or circulatory disease can mean that you are at higher risk of other diseases such as viruses, diabetes and vascular dementia (among others).

Philippa: Maybe something people think is surely when you’ve had a heart attack, that’s it right, there is nothing that can be done?

Beth: In most cases if you’ve suffered a heart attack you’re likely to have a stent fitted (which is where they use a meshwork to open up the blocked artery to gain blood flow back into the affected artery). After having a stent you’re likely to be a cocktail of medication to aid the hearts repair which are typically a combination of anti-platelet drugs to avoid unwanted platelet activation. Most people tend to make a full recovery after having a stent fitted, along with appropriate medication and cardiac rehab most people that have suffered heart attacks can go on to lead a relatively normal life.

Philippa: What’s the difference between a heart attack and a cardiac arrest?

Beth: A heart attack occurs when a blocked artery prevents oxygen-rich blood from reaching a section of the heart. If the blocked artery is not opened quickly that part of the heart can begin to die. The longer without treatment the worse it can be. Symptoms can be slow before the heart attack. The heart continues to beat (unlike cardiac arrest). Whereas, cardiac arrest occurs suddenly and without warning. Triggered by an electrical malfunction in the heart which causes an irregular heart beat. The pumping action is disrupted and cannot pump blood to the brain, lungs and other organs. Typically a person will lose consciousness and have no pulse. Cardiac arrest CAN happen after a heart attack, heart attacks increase the risk of sudden cardiac arrest.

Q&A with a Heart patient

You’ve had a Q&A with a BHF Researcher, but how about a Q&A with a heart patient? Beth has some questions for myself.

Beth: What other implications does having a heart condition have on your life?

Philippa: I think this is an interesting question, obviously every heart patient is different. I myself was, well, fortunate, I don’t know if that’s the right word, to have my surgery at one week old. From then on its been finding out one problem after another…

I think this has meant I’ve had my fair share if not more of hospital appointments. There are things I have to be careful with more so than others. I think one thing which people may not consider is the emotional impact of a heart condition. Obviously you get one heart, once it’s damaged, that’s kind of it. There are things we can do, like in my case, holes can be repaired, a lot of wonderful things be done. But repairing something is about dealing with working with what you’ve got… The damage of a heart attack for example, cannot be reversed…. I think it just feels quite stressful and upsetting….

Thats kind of one of the reason I got involved with the BHF… I heard about these Zebra Fish which can repair their own hearts, and researchers wanted to look into that…. Science is incredible… but we need to understand something before we can do anything else and I think when I heard about these zebra fish I had a sense of hope, that maybe one day…. we could repair a broken heart… I think there’s a lot of emotion around this question for me, because ever since I was born, I’ve dealt with many problems and who knows if they are all linked?

Beth: Do you take any tablets?

Philippa: I take two kinds of tablets, I used to be on one kind, then two, then back down to one…then my toes went purple, so I’m back on two. They can be quite expensive, about £18 or so a month for two boxes, for one month. I’m paying about £216 a year for tablets. Roughly since I was 13 let’s say that’s about £3240 I’ve spent over 15 years, to stay alive. However, there is an option that if you are on tablets for life you can get 3 months for the price of one (which is what I do) but that’s still expensive. I’m paying for a problem no one created, it just happened. It’s life, I manage with it, although that’s not to say it’s easy. It’s hard and stressful, but you manage it.

Beth: As a heart patient what does ongoing treatment look like?

Philippa: Due to the nature of my many health issues I have various different appointments, I have high blood pressure caused by a malfunctioning kidney so I’m on review for that. When it comes to my Heart health I go for an appointment once every 2/3 years. You might not think it’s much, but because of all the other health complications I have this is just another appointment to have to cope with.

When I’m at the hospital I have an ECG and I have an ultrasound, which is rather cool because you get to hear your heart beat. I don’t always get to see it because of the side I’m laying on. I then have an MRI scan booked because ultrasounds are limited in what they can show and the Drs want to get as full a picture as they can.  (I have had number of these for a variety of health problems, such as my kidneys) I normally go the BRI for this and again, the people there doing my MRI are amazing, they are caring and help me to feel as comfortable as possible.

I go to the LGI for my heart appointments because that’s where there is a specialist Heart Unit. It’s pretty much an all day job as we have to travel there and back. The staff at the LGI are amazing. The heart unit is wonderful and there’s another charity called The Children’s Heart Surgery Fund which works closely with the unit to support families and those in hospital to be as comfortable as possible. Dr Waterson, one of the surgeons who did my surgery is responsible for setting up the charity. One of the lovely things they do for the children is when you’re in hospital and you’re having your surgery they give you a bear with a heart on, called Katy. My Bear, which I still have is called Rosie. They also give each child a medal for being heart hero’s, which they truly are.

The BHF and Coronavirus

The British Heart Foundation are creating a wealth of information around Coronavirus and how you can stay safe. There was an article posted on the BHF Twitter account about going into hospital during this time. This is is important as hospitals are starting to get patients back in to be able to have the surgery they need.

Coronavirus has had a massive impact on minority backgrounds such as the Black and South Asian Community. There are a number of causing factors and it has been highlighted in an article by the BHF. While the purpose of this blog post is to raise awareness of the need to donate and fundraise for the BHF, we did not want to ignore the higher death rate from Covid-19 and we wanted to ensure that the information is made available in this blog post for those who suffer from Heart and Circulatory Disease, as this is the purpose of this particular blog post. This information can be found here.

More from Beth

If you want to hear more about what it’s like to be a BHF PhD researcher go check out Beth at:

Blog: www.bethology.co.uk

Twitter: @beth_webb29
Instagram: @_bethology

More from me

Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip

Thank you for reading our blog post around the need to keep fundraising and the importance of the BHF in todays world. I am very grateful to Beth for giving her time to help me write this. It would not have worked without her.

If you would like to donate to the BHF please go to my Just Giving page to donate.

Please remember that Heart Disease is the biggest killer globally and that one day, together we can Beat Heart Break Forever.

“In 1961, more than half of all deaths in the UK were attributed to heart and circulatory diseases (320,000 deaths).”

“Since the BHF was established the annual number of CHD deaths in the UK has fallen by more than half”.

Additional Links:

Visually Impaired Art with drawings for The British Heart Foundation

www.bethology.co.uk

https://www.bhf.org.uk/what-we-do/who-we-are

BHF Statistics Factsheet – UK 

https://www.bhf.org.uk/informationsupport/publications/research/our-research-almost-60-years-of-lifesaving-breakthroughs

https://www.bhf.org.uk/informationsupport/heart-matters-magazine/news/coronavirus-and-your-health/going-into-hospital-during-coronavirus 

Welcome Page 

Hello again,

As June is Scoliosis Awareness Month I thought I would write another blog post about it. I am more than just my curve, but my curve gives me a lot of pain. Therefore I have to be aware of my posture all the time. 

The problem with this is I’m too busy being aware of my surroundings as a Visually Impaired Person. So my curve is another element I must try hard to be aware of. It takes a lot of energy to be aware of you posture. However, it also takes a lot of energy to not be aware of it. 

The more you let it slide the more painful it becomes because you have tensed up and you have allowed your muscles to set and become tense. You start to hunch over, you hold yourself in a position which might be natural to you. But over time becomes uncomfortable. 

One of the reasons I am glad the lockdown has eased, is that I can now go for a sport massage. Some of you might not think this is reasonable. But when you are in pain and you’re taking tablets on a daily basis, you really need to consider the option of a sport massage. I chose to go for one as I knew I would be expected to go back to work and needed to feel as comfortable as possible. Which on top of all the Coronavirus stuff I also had to feel comfortable with my back. 

I had not been for a sport massage since early February, it is now June. Although I have not been in work since March, it does not mean I have been without pain. 

When I went the guy who does my sport massage did wear PPE, so it was as safe as it could be. He obviously washed his hands as soon as he came in. There was also hand gel for us to use, which we did. When we finished we went straight home and washed our hands. 

My back feels a lot better. My muscles feel soft. Where as before they were hard and tense. We have another appointment booked for a months time. The pain is still there. But I am able to now sit up straighter and lean to both sides better than I could before. 

Due to Coronavirus a lot of operations and hospital appointments have been put on hold. This means those waiting for their Scoliosis operations have had to wait too. Surgery is usually a last resort for a lot of us. The pain gets to be too much. When you have the surgery you are in so much pain afterwards. You’ve had two metal rods, known as Harrington Rods placed down either side of your spine and screwed together with your spine in the middle. This is done in an attempt to stop your curve getting worse and to correct the curve. 

Personally I’ve never had it done. However if you go to SAUK you will find a lot of info around the surgery and what comes afterwards. It’s scary and there can be complications. But the level of support you receive is immense. I have spoken to physios who’ve worked with those who’ve had it done and they tell you how difficult it will be, they don’t sugar coat it. But they also tell you that they will be there to help you get through it. 

Thank you for reading my blog and don’t forget to check out my other posts on Scoliosis. 

Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip

Hello again, 

This post is going to be about the impact of easing COVID-19 on Disabled people. I will also be taking a closer look at what it will be like from a Visually impaired persons perspective. 

Over the past few days I have been worrying about what going back to work will look like. What the new normal will look like. Many disabled people are worried about this too. Making very valid points about how we as a community have been forgotten.

Throughout this whole pandemic the Disabled Community has been forgotten. We exist, we have voices and we have a right to exist. According to Scope there are 13.9 million Disabled people living in the UK. As Dan White rightly pointed out on Twitter, where is the Minister for Disabled people being outraged on our behalf with regards to the lack of support we have had during this lockdown period? 

According to Scope 19% of working age adults are disabled, which means that more than 3.7 million disabled adults work. According to the RNIB’s website ‘As of 2017, there are around 350,000 people on the registers of blind and partially sighted people in the U.K’.

Mik Scarlet tweeted ‘Well, the fears of disabled people being forgotten as lockdown is lifted appear to be founded. In London @TfL & the rail sector seem to be introducing systems that exclude us. No assistance offered at all, no Turn Up & Go & no car zones. Only solution offered? @The_LCDC.’ 

I completely agree with Mik as this has also been the case throughout the whole of the lockdown period. As a visually impaired person I am being asked to practice social distancing. How am I to do this when I have poor eye sight? 

My guide cane is supposed to aid my navigating in general and now helps me to social distance. However, on a normal day people push past me to get on the train. Step over my guide cane to get to priority seats while saying ‘Oh sorry…’ and not moving at all. 

As I write this I am reminded of this exact incident on a train. Another passenger got on, pushing past me as I tried to navigate between the seats. They stepped over my Guide Cane, I pulled it little higher, they stayed exactly where they were, giving no option but to pull my Guide Cane from between their legs and they continued on  to sit down in the priority seat. I said in a sarcastic tone ‘Oh sorry…’ to which they replied ‘Its OK’. Thankfully a woman saw this, moved her bags and allowed me to sit in the other priority seat. If you are able to push past someone in that manner then you need to stop being so self centred. 

Thinking back to Mikes comments around there being no thought by our government to help disabled people with travel, if there has been, I genuinely haven’t seen it. How are Disabled people supposed to deal with the attitudes we already have to put up with- as my experience above shows, and the new ways in which we are expected to live? 

Below I have taken a few Key Points from the Guide Dogs website around assisting visually impaired or blind people when considering social distancing. 

1) ‘People with sight loss will often have difficulty finding a seat. During the pandemic, and when it is possible that some seats are blocked off, it will be even harder for them to do so. Please ask the passenger if they need help identifying a vacant seat and that is a safe distance from other passengers.

2) Bus drivers will always prioritise the safety of all their passengers, but it is essential that vision impaired passengers are able to get off the bus at the correct stop. It can be frustrating and disorientating for a vision impaired passenger to miss their bus stop but this could be even more of an issue during the pandemic as changes to normal road and pavement layouts may be brought in to facilitate social distancing. Added to which, people may find it difficult to ask the general public for help when dropped off at an unfamiliar location.

3) Provide clear instructions when describing a route or when you would like the person to change direction e.g. left and right

4) Having identified the appropriate seat, describe its location (e.g. “just coming up on your left left/right, facing towards/ away from you”) and whether it is airline style or has a table. Before leaving, describe the layout of the carriage including the location of toilets in relation to where the passenger is sitting and the layout of any social distancing restrictions in place.’

When considering these points I would like to link back to my experience I wrote about earlier. People do not afford Disabled people the space they require already, never mind with the impact of social distancing. How are we supposed to feel safe in this new way of living? We are relying heavily on others. As I am looking at this from a visually impaired persons perspective I am extremely concerned there is a lot of talk around one way systems, changing road and pavement layouts, moving seating from inside to outside…all of these elements rely on you being able to be visually aware. 

It appears as though life outside London does not exist to a lot of people at the moment. Whenever you see the news it’s all London centric, as a lot of the time it is. Now apply those same feelings of being ignored by your government during a pandemic but to all the time. We are constantly forgotten, ignored and then when we are listened to we are given the minimum amount of attention. 

It is left to people like myself Mik Scarlet, Dan White, Chloe Tear, Philippa Claire, Dr. Amy Kavenaugh, Luke Sam Sowden, Pippa and so many more to make our voices heard. Then we have all the fabulous charities who pick up the pieces left behind after the government have made sweeping statements and generalised assumptions to say, ‘excuse me, but what about these groups of people?’ Charities like Scope, Guide Dogs and The RNIB. You do have localised parts of government who work exceptionally hard with to support the disabled community. However they are dealing the pressures imposed by recent governments on financial cut backs. A discussion for another time. 

The sad part is it is not just done in relation to the Disabled Community. No. Black, Asian and Ethnic Minority groups deal with this too. However this is again an argument for another blog post. 

Please do check out the people I have mentioned above, they do some fabulous work and I would love to have a coffee with them and have a good dissuasion in person about what needs to change. But until then I shall follow them on Twitter. 

Please please please be kind when you go out and use public transport, do not just look up, see a person with a white cane and ignore us. Do not think the person who has ignored you is rude, they could be Deaf or Hard of Hearing. If you see a wheel chair user do not start to push them, ask if they need help. We are people first. Where our government has failed to help us in this pandemic we rely on the good will of people around us to help. We do not deserve to be forgotten. That is why I am writing this post. I am genuinely worried and upset. 

I have text my friends and spoken to my work. They have all said not to worry and that they will be there for me. We will get though this together. Which I fully appreciate and am grateful for. However I deserve to have the respect of everyone around me, of my government, regardless of my Disability. This goes for every person in this country. We deserve to be heard. 

Thank you again for listening, if you would like to help with the Guide Dogs Campaign to ensure table operators are supporting the Blind and Visually impaired correctly please click here. 

I’m on Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip

Email: randomlyanxious@googlemailmail.com