About Philippa B

I am a visually impaired, dyspraxic person with CVI. I don’t always see things even when they’re right in front of me. Follow my musings and I hope we don’t get lost.

Fundraising

Hello, 

Some of you maybe aware that I am currently in the process of fund-raising for two amazing charities; The British Heart Foundation and The Children’s Heart Surgery Fund. I wanted to give you all an update on whats going on so far. 

I have been counting my daily steps and cycling on the exercise bike in the garage to build up my miles. First of all I did the distance from Bradford to Newcastle, we’re now doing Newcastle to Liverpool. From there we are going to do the distance to Bristol and from Bristol we are doing the distance down to Lands End. In total I am doing 660 miles. I aim to have this done by March 20th!!

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=PhilippaBarraclough&pageUrl=1 

A red heart with stitching up the middle holding it together. There is a needle and thread sat underneath.

A heart stitched back together.

Some of you are probably thinking this post is a little different to my usual blog post about Disability and you are right, it is different. 

However, what I need to tell you all is that I was born with Congenital Heart Disease. Who knows, this might have been the cause of all my Disabilities. We will never know.

One of the reasons why this challenge is hard for me is my curved spine. I have Scoliosis. The top half of my spine curves outwards and almost touches my shoulder blade. It leaves me in pain and means I have to take tablets on a daily basis. Once a month I go for a sport massage to help my back muscles as they get quite tight and very uncomfortable. 

This challenge is something I am doing for my 30th Birthday. I want to give back to these charities. The Children’s Heart Surgery Fund was partly founded by one of the Surgeons who is responsible for saving my life. I want to raise awareness for this fabulous charity based in the Leeds General Infirmary. They offer support to families and their children as they go through the journey from diagnosis of a heart condition right the way through all of their follow up appointments. They are there to support staff to support their patients to make their stay in hospital as good as it can be. They provide a place to stay for parents who’s child is poorly. They offer emotional support. This charity is truly wonderful and does so much to help the patients at the LGI. 

I am supporting The British Heart Foundation because they are working to Beat Heartbreak Forever. They are funding research into areas such as Circulatory Disease and Vascular Dementia. Their 750 stores go along way to help sell your old items and maybe they could be where you pick up your next outfit? 

If you want to see Heart and Circulatory Disease in Context then click here. These numbers will show you why I am doing my bit to help raise money for the British Heart Foundation. 

I will be posting more about my fundraising as we go into the next few months. It might not be disability related directly, but as I mentioned previously my Disabilities could have been caused by my Congenital heart Disease. 

If you can spare £5 thats £2.50 to each charity you will be doing something wonderful. Thank you very much. 

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=PhilippaBarraclough&pageUrl=1 

Dyspraxia

Hello All, 

This week is Dyspraxia Awareness Week. When I started blogging, over ten years ago now, I started because I wanted to talk about Dyspraxia. Twitter allowed me to meet some people who were also Dyspraxic, which was brilliant. As time went on I started to blog more about Dyspraxia and Dyscalculia and then onto my visual impairment. 

For those of you who do not know Dyspraxia is a Developmental Co Ordination Disorder. It means I find movement and co ordination of movement very hard. I also find it difficult to co ordinate my thoughts so I can appear uncomfortable or not very confident. But I am. 

It took me until I was about nine years old to learn to ride a bike, I still struggle to tie my shoe laces. Buttons are a real difficulty. When shopping for clothes I have to make sure the buttons are doable. Doing everyday tasks when you have Dyspraxia is very hard. 

The best way I can describe it to you is this: imagine you’re just doing a normal thing, like making a list. 

Now say someone comes in and starts talking to you.

Then they start tapping you on the shoulder as well. 

Now someone else has come in and is also talking to you. 

They decide to start tapping away on the table. 

Then you get a phone call. 

Now one of those other two people has asked you to read them something. No reason. 

You have just remembered you are cold and want to put a jumper on so you start to do that. 

You’re on the phone, writing your list, trying to put your jumper on and those people are still talking and trying to get your attention while tapping away.  

It’s very hard to multitask. Being Dyspraxic is like multitasking all the time. You never get a break because everything takes so much effort and it is exhausting. 

Some things that can help those of us who are Dyspraxic are: 

Making a lists. 

Visual Reminders. 

Breaking information down into small chunks. 

Allow us extra time. 

When thinking about how you can help a person with Dyspraxia remember to be kind to them. Don’t over whelm them. When we get overwhelmed we become very stressed out. Help us to become better at organising our time. This can really make  difference to us. When we feel we are on top of things we are a lot more confident and can succeed. 

We may take a little longer at doing something, but thats OK because we have a very different mindset to everyone else. We are quite creative and you will see that is evident in our work. 

Don’t dismiss us because we appear to be all over the place. W jesuit struggle with organisation at times. But when we do get organised and sort out what needs doing and we plan. We are very efficient because we know what we’re doing when. 

Dyspraxia Awareness Week is every year 5-11th October. Celebrate our Differences and lets work to build a Dyspraxia Friendly World. 

Dyspraxia Awareness

Hello, 

I am currently very busy as I have a lot to do. So today I got up and sorted out the washing, then did the washing up. Mum went to Tesco and did the shopping for us, some family members and neighbours. We have been very  busy. I have decided to take a page from my friends book and booked a whole day in my calendar to do nothing. This is something I need to do to recharge. Otherwise I will get very overwhelmed which can happen very easy. 

I am currently in the process of fundraising for The British Heart Foundation and The Children’s Heart Surgery Fund, based in the Leeds General Infirmary. Check out my fundraising page here and donate.

My organisation has become better but I could defiantly improve. I am a big user of the notes app on my phone. In the past few days I have decided to create a calendar on my phone specifically for my fundraising. Now everything to do with that, goal dates, phone calls, setting up events, can all go into there. I feel like this has helped to calm down a little because everything is not all up in the air. If it is written down then it is manageable. 

One other thing I did and continue to do is to keep on top of my inbox. A while ago a friend decided to organise his inbox and he posted a picture of an empty inbox on Twitter. I was jelous so decided to do the same. He was right, it is a very therapeutic. Keeping on top of this is something I quite enjoy because you can unsubscribe from all the nonsense you thought was good idea the time. It is also very satisfying haha. 

I think one of the reasons I have decided to write this blog is there has been a lot of talk on Twitter lately about Dyspraxia. One of the reasons I got into blogging was that I wanted to help raise awareness of Dyspraxia and to find other Dyspraxics, which is what I did. It can be hard living with Dyspraxia as it is not just about the lack of coordination which people always assume it is. It can be about coordinating your thoughts, time and energy. I often have a lot of ideas in my head but struggle to get them down. So I do rely on others to help me with this. 

The calendar app and the notes app are brilliant, you just have to remember to look at the notification when it pops up. Otherwise it is quite pointless. Organising my inbox was like decluttering inside my head. Making space for the important stuff and getting rid of the old stuff. Plus making way for anything new. 

Dyspraxia Awareness week is the 6-10th of October this year. I would recommend checking out the Dyspraxia Foundation. Also just search for other Dsypraxics on Twitter. We’re out there and we’re willing to talk to about Dysrpaxia so we can help you help us. 

Til next time, 

Philippa B. 

Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip 

Remember to always be kind and give people the time they need. The world is a hectic place and its important to just take 10 minutes everyday to sit and just have a cup of tea. Nothing else. Just be in the moment. 

Dropping in

I am just dropping into let you know my blog is still here. I am still raising awareness for disability. Currently I am on a nice week off work. It’s been quite relaxing sitting and doing very little. 

It has been nice not being in work and just getting things done that I needed to. Like cleaning under my bed. Very exciting stuff I’m sure you’ll agree. Yesterday I made time to clean under my bed and behind my comfy chair. This needed doing, especially now it is coming up to that time of the year where those big house spiders seem to just appear from no where an announce they are moving in. 

As the weather was nice I was able to do some social distancing with friends. We went to the park. It was lovely to see them. I am still not happy with sitting in a coffee shop just yet. However I will get there. I just want to make sure the coffee shop is not too busy. I do miss my friends. 

The reason my blog has been a little quiet lately is I am in the midst of working on a fund-raising effort. I am doing virtual fundraising, check @PipsTurning30 on twitter and you can follow me on my blog too. I am aiming to raise £3000 for two amazing charities, The British Heart Foundation and The Children’s Heart Surgery Fund, based in the Leeds General Infirmary. If you are able to support me, please visit my Virgin Money Giving page where you can read more about my story. I will be sure to keep you updated and I’ll be talking to you about it properly very soon. 

This was just a quick post as I need to get going on my fundraising efforts. I am still here raising awareness for disabled people and helping to support you guys who are championing disabled peoples rights too. 

BBC and Accessibility

Hello again, 

I would like to make a note surrounding this blog and it’s contents. Yesterday I was making the BBC aware of Accessibility issues within their iOS BBC News App. Since writing the original post and logging a complaint officially the issue has been resolved. However my blog will still be posted as there are other issues within this post which also need to be addressed. 

Hello again, 

I have recently noticed that the BBC app v5.18.0 is not very accessible. There is no option to be able to increase the font size of the text within the BBC news app. However inside the settings on the app it says to change the font size on your device itself. I have the font size set as high as it will go. Still no luck. 

So I have decided to let them know, via Twitter and through an email to their accessibility team. This is what I have sent: 

‘Hello, 

I am using the BBC News app v5.18.0, the app is no longer able to increase the font size. Even though my iPhone font size is set to its maximum level. On the app it suggests to change the font size within iOS itself, which is what I have done. There is no way, as far as I can see to be able to increase the font size within the BBC app itself. 

I do not wish to use the Zoom feature, as this is not going to work for myself. I have a condition called Nystagmus which means my eyes wobble and with the additional motion on the screen using the magnification feature, my eye wobble will increase and it will begin to feel like I am on a roundabout. 

If you could address this issue and add in a feature to make the font larger, or tell me where this feature is, as I cannot find it? Thank you. 

Kind Regards, 

Philippa Barraclough.’

I thought emailing would be a great way to get directly to the team who needs to see it. I found the email address on this website. I clicked on the option to email the Accessibility team, sent my email and then got on with my day. However, I opened my emails and saw a reply saying ‘Address not Found’. I then decided to Tweet about this, as I was very frustrated. I tried to email the address again, just to make sure. Still same reply. After texting my friend she was also surprised at this. 

What is even more frustrating is that I had found this website- for the Accessibility Team, and assumed they would be the best people to contact. Given this is an Accessibility issue I am bringing up. On further reading of the website I have noticed that it says ‘Please note: the Accessibility Team can only deal with questions or comments concerning the My web my way site and related accessibility issues.’ So does this mean I was emailing the wrong people? I am going to go with yes. But why is the Accessibility Team only dealing with My web my way site? This is again confusing. 

After searching a bit more I found this page for FAQ’s. I then scrolled down and found out how to contact the Accessibility Team. This then lead me back to the original page I was talking about where I found the email which does not exist. Surely if you have an issue with something to do with Accessibility you should contact the Accessibility Team? Please help me out here. 

I am now taking to my blog to share my frustrations with you. How is it that an app can be updated and a simple Accessibility feature is taken away? This is ridiculous. A major organisation such as the BBC should be able to check that their app is accessible. It cannot be that hard to check it and ensure you have the ability to increase a font size. Before anyone suggests I use the Magnification feature built in on iOS, I would like to point out that I have Nystagmus which means my eyes wobble and don’t need the additional motion of the screen moving backwards and forwards as I navigate across the page to read a simple article. Is this too much to ask BBC? 

I then found a page which would allow me to complain in a different way. This page allows you to chose from  different areas of the BBC. I have opted for ‘General BBC’. As this is a general issue, first of all they have failed to make their app accessible. Then they fail to make their complaints system accessible by having a link to an email which does not work. 

It’s made even more ludicrous when you see that BBC has a website dedicated to giving disabled people a voice. Please check out BBC Ouch. 

Over the next few days I will keep an eye on my emails and see if I get a response. This is amusing as I have only one eye that works well enough to go about my day. 

Thank you for reading, 

Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip

What have I been up to?

Hello, 

I am back after a short break, getting back to work and managing other things I had to had to get back into the balance of managing stuff. I am back now. 

I have been doing OK. Just a bit tired. The past week I have been off work on holiday and I have a few days off left. It has been nice, but because of the weather I have been unable to social distance outside with my friends. I am still not feeling comfortable enough to sit inside a coffee shop or restaurant. Which is frustrating because I want to see my friends. But we had video chat the other day so that was nice. 

What has also been good is being able to go for my sport massages again. Last week I went for one and found that I had a few knots in the middle of my back where my spine meets my shoulder blade. But I have new exercises to continue with so they should help. 

Another thing I am happy about is that Rugby League is back on. So now on a Saturday I can watch NRL in the morning and Super League in the afternoon. However, I am not getting up at 5am to watch the first set of games, I’ll just wait until mid morning and watch those. The problem is I am back at work on Saturday so I’ll miss the matches. Booo!!! I am glad rugby is back. I enjoy it. I never really understand the excitement around football, but rugby is something I can get into. 

In general I don’t have much to talk about as there’s not much going on. So I’ll leave it there for now. Really this was just a quick catch up post and I’l check back in later. 

Stay safe, 

Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip

Self Care

Hello again, 

As I have been back at work now for a good few weeks I thought I’d share with you the importance of self care. 

Self care is important, especially now when the world is adjusting to trying to find a new normal. What is normal anymore? We’re all having to adjust and learn how to cope with new ways of living. One of which is masks. Now I’m not going to get into a discussion about wearing them. That is not the point. The point is we’re adjusting to so many changes and wearing masks is one of them. 

So thinking about self care we must consider looking after our skin more. When I come home, as well as washing my hands I wipe my face. Before I go to bed I put hand cream on and use face cream. Not only is it important to practice good hygiene, but we also must remember to look after our skin. This means finding a good skin care routine. If you would like to know more about this please head over to Lukes blog as he has a lot of information on skincare products. 

Besides skin care being really important right now, the thing I am trying to do is think about how I’m spending my time. I am trying to get back into listening to audiobooks. They are a nice way to relax and they help pass the time when you are washing up or dusting. 

sA blue bath bomb in the water, fizzing.The other thing I am remembering to do is have a nice bath with a bath bomb rather than normal bubble bath. It’s important to feel like you’ve had a good relax. Baths are the perfect thing for this. You can try switch off and just be. You’re not watching TV, you’re not listening to music, you’re not tidying up, you’re just being in the moment. Let’s face it, that is something we hardly ever do. It was something we had to try and do during the period of being at home during lockdown, but now we’re easing back into this new way of living we need to remember to try still have those moments where we can just sit and do nothing. Where we can just spend time sat with a cup of tea. That’s why I think baths are my perfect option. You don’t have to feel like you should be multitasking. You’re in the bath, you might as well relax. 

If you want to, I would check out Philippa Claire’s blogs, there’s some wonderful things on there around self care and managing your time to make the most of your time. 

Self care is something we need to do. It is not about being selfish, it’s about thinking ‘what do I want?’ You can’t do your job well if you are run down, you can’t look after others if you yourself are run down. Our bodies and minds need time to relax and recharge. If we take time daily to do something we enjoy, go outside, go for a walk, have a nice cup of tea, do some drawing, we can do wonders for our health. 

Now more than ever we need to do this. But we also need to ask ‘what do my friends need?’ maybe just dropping them a text asking how they are, ask them what they’ve been up to? Doing this can also help our own well-being because we then know we are not alone in how we feel. It is a difficult time for everyone and maybe your friend could cheer you up? Or you could cheer them up? 

Be kind to yourself:

Text a Friend

Make a cup of tea

Run a bath 

Put the washing outside rather than in the drier. Yes this makes me happy. 

Ask if someone would if they would like to go for a coffee, or you could sit in their garden. 

It’s all about the little things which could make you or someone else smile. 

I’m off for now. I’ll check back in later. 

Twitter: @PhilippaB                                                                                                         Instagram: @VisuallyImapiredPip 

Books So Far in 2020

Hello again, 

Today has been my day off work, so I have got a lot of stuff done around the house I needed to get done. Now that’s sorted I can sit down to write my blog. 

At the beginning of the year I wrote about how one of my goals was to read more. My brother bought me an Audible subscription which I Have deffinatley made the use of so far. I tend to go through phases of listening to lots of books, then stopping for a while. But now I am getting back into it. So here’s a list of books I’ve on my Audible bookshelf. 

 

IMG_1032

Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently 

I am currently listening to this and it is an interesting read, I’m learning so much about the History of Autism and how this history has shaped the world we live in today.

I absolutely loved this book. The women discussed in this book come from so many different backgrounds and they all have a lesson to teach us. Their are modern women, women from history, women who you might not have known much about. One woman who stood out to me was Coco Chanel, a person who’s history I knew nothing about. I found myself wondering why I knew so little. I 

 

have added her to my list of women I must read about. She was not only a style icon but a woman who new what she wanted and was not going to let anyone get in her way. 

I won’t discuss anymore of the women in this book, because I would highly recommend giving it a read. People often discuss powerful men in history, but they forgot to talk about how they had influential, powerful women stood behind them such as Indira Gandhi. 

This book is currently on my shelf. 

In Search of Black History with Bonnie Greer

Currently on my shelf. 

I found this book to be quite interesting, it has allowed me to now consider why people behave the way the way do. 

This book I absolutely fell in love with, from the moment I hit play. So many things Laura James mentions I found myself agreeing with, I had never read a book I could relate to in so many ways. 

 

 

I am thankful I found this book. 

Sandi Toksvig is someone who you just want to hug. I love her on QI and on Bake Off. When I saw this book advertised I knew I had to listen to it because she is such an incredible woman. She fights for women’s rights and I think this book is so powerful. There are many women in history who go ignored and Sandi’s book really opened my eyes to just how much. London is one of the busiest cities in the world and to go on an adventure with her on a London bus to discover women in history was an absolute delight. 

 

 

 

A podcast I found 

Currently on my shelf. 

The Forking Trolley: An Ethical Journey to The Good Place

James M. Russell

I absolutely love The Good Place so when I saw this I just had to buy it. It really made me laugh, it discussed the lengths at which the show went to try and get everything right. So that there could be no holes in the plot line, especially because they were dealing with something as tricky as Ethics. If you are a fan of The Good Place I recommend reading this. 

 

So that’s it for this week, I just wanted to do a bit of a catch up on what I have read, what is on my shelf and what I hope to read in the future. 

The books I read tend to be history or biography. I love to learn about people and to understand events and places so I can expand my knowledge of the world and the people we share this Earth with. The more we understand one another the more we can move forward together to create a more equal and positive world for us together. 

 

Thank you for reading and if you have any book suggestions then let me know. 

I’m on Twitter: @PhilippaB

I’m on Instagram: @VisuallyImpairedPip

Beary Quiet

Hi,

For a long while I struggled with sleeping, one of the reasons was down to my room not being dark enough. So we got some black out blinds fitted. They work quite well. However there was also another issue, noise. No matter how quiet you might think it is, as soon as I lay down to shut my eyes I can hear everything. 

When I say I can hear everything, I mean everything. From that weird noise the fridge makes every so often, to a car outside. I decided I would purchase some ear plugs. Searching online I came across a company called Beary Quiet. The name made me chuckle so I decided to check out the reviews. People had left some great reviews on Amazon so I thought I’d give them a go for myself. 

IMG_1649

On Amazon this is what they have to say for themselves:

‘DESIGNED FOR HIBERNATION…

Small But Mighty

Our slow rebound foam is designed to form a expansion seal against the walls of your ear canal. Activating a 37dB (decibel) barrier to noise.

  • Enabling you to achieve REM Sleep (Rapid Eye Movement)
  • Flared bell shape increases sound absorption to bounce unwanted noise
  • Boosted Fibre Blend forms a safer structural design. Preventing any risk of the plug disintegrating in your ear when in use

Comfortable Sleep

We engineered our earplug with Soft Sonar Foam which has a premium texture verses the traditional sponge foam earplugs.

  • Key benefit being, it’s comfortable when worn and it has an improved grip within the ear canal when you sleep

Noise Reduction

Beary Quiet earplugs dampen noise around you by 37 SNR dB (sonar decibels). They won’t block noise entirely but there’s a reason behind this…

We’ve engineered our earplugs to provide a perfect harmony of reducing unwanted noise and permitting important audible alerts such as smoke alarms, home invasion and most importantly your alarm clock!’

They arrived fairly quickly and as soon as they turned up the first thing I noticed which I really liked was the packaging. It comes in a circular tube, with a picture of a bear on it. I would like to think it is recyclable, which is better for the planet. Inside the tube is a packet of 30 earplugs. You also get a little tin to keep them in during the times you’re not using them. The earplugs themselves are black and feel quite squishy. 

There are different sorts you can buy but I opted for premium foam reusable ones. You get 30 in a pack. 

I have had the earplugs since….late May this year. So I thought I’d let you know how I’ve got on with them. As I mentioned before I really struggled to fall asleep, due to many reasons, one of which was the slightest noise. 

You take them out the packet, they all come in one big plastic bag, rather than individual bags. Roll them between you finger and thumb until they are stick thin. Then place them into your ear. Hold them inplace while the foam expands and then let go. Beary Quiet says they block  out up to 37 SNR DB of noise. So obviously they don’t block out everything. I can still hear certain things, but the sounds are now nicely muffled. However, this is only when I am starting to fall asleep. Once I’m off to sleep I don’t wake up because I’ve heard a noise. I must be quite a deep sleeper when the conditions are right. I genuinely love them and I will be buying them again. They have made such a massive difference to my sleeping.

As for the reusableness… that’s a word right? meh… it is now, I think they’re living up to that. I use mine for 2 nights and then put them in the bin. I am concerned for my ears so I want to make sure they stay as clean as possible. So I don’t use them more than twice. 

I would recommend Beary Quiet to anyone who is struggling with sleeping due to noise. It is now July and I have been using them since late May. Even if I can’t sleep because I can’t switch off, the noise reduction is very beneficial because it’s one less thing I have to contend with. Meaning if I can’t sleep, which has happened, I can just lay their and enjoy the quiet as much as possible. 

I would just like to point out that I have written this blog post reviewing these earplugs without any endorsement from the people of Beary Quiet and I hope that you maybe try them out to see for yourself. They only cost £12.99, but on Amazon where I bought them, directly from Beary Quiet, they cost £8.99. Click here if you to want to hibernate peacefully, without missing your alarm clock in the morning. 

Whilst I have you, if you have a few pennies spare would you mind donating to my Virtual Fundraising Tin for the British Heart Foundation?

If  have written a blog post about why here.

Right I’m off. 

I’m on Twitter: @PhilippaB

I’m on Instagram: @VisuallyImpairedPip

British Heart Foundation Blog Post with Beth and Philippa

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 red heart with stitching up the middle holding it together. There is a needle and thread sat underneath.

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 

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