In Honour of Our Donors

On the 7th April, there was an unveiling and dedication ceremony for the Donor Family Network 'Gift of Life' memorial at the National Arboretum, Alrewas, near Lichfield. The memorial is to commemorate the lives of organ and tissues donors and acknowledge and celebrate the significance of what they have given in saving and transforming the lives of others. The most precious and wonderful gift that anyone could ever give. The ceremony was attended by the Duke of Gloucester, families of donors and transplant recipients and their families. 

The Donor Family Network is a leading donor family charity in the transplant community and aims to raise awareness of organ donation and provide support for donor families. 

As a transplant recipient I try to honour my donor every day in some way -  they are always in my thoughts as well as their family. I'm pretty certain most transplant recipients feel that way too. To have a national memorial for our donors is very important to us, as it signifies to others the miracle of leaving such a legacy and it gives us a place to visit and pay our respects to those that have both transformed and saved our lives. 

To have our donors publicly acknowledged to the world means so much to us recipients, as well as to their families. A national memorial is a huge statement highlighting the importance of organ donation to everyone. Personally, I cannot wait to go and see it and will definitely be visiting the arboretum this summer and hopefully with some other members of my 'transplant' family. 

I wrote my first book in honour of my donor and to raise awareness of the importance of organ donation. It explains what it feels like to be living on the transplant list. I lived on the list for just over two years and it was an extremely difficult time when I knew that three people die each day on the organ donor register. There are still circa six thousand five hundred people waiting for a transplant and still three people die each day waiting for a transplant. That is why our donors and their families are so special to us. 

Extracts about living on the transplant list from 'Life is for the Living':

'We are ...treading warily through the sand, avoiding puddles left by the sea. Some of them are deep. We don't want to get our feet wet or sink...we are living on a list. The first day of living on a list and we are stepping cautiously.'

'I know I'm lucky to have survived this first year on the transplant list...Three people a day are still dying waiting for a transplant...One thousand and ninety five people won't have survived this year while I've been waiting...'

Amazon link to purchase 'Life is for the Living'

Below are links to news on the 'Gift of Life' memorial and the Donor Family Network website. 

NHSBT news release

The Donor Family Network

Photos: Donor Family Network 

The Issue of Family Consent to Organ Donation

Organ Donation and Transplantation made the news once more last week. Sally Johnson, Director of Organ Donation and Transplantation announced that family consent will no longer be required when a potential donor has already made their dying wishes clear by signing up to the the organ donor register.

By law the consent of the 'next of kin' isn't required, but families are asked out of courtesy and respect but unfortunately one in seven families refuse to give consent when they are asked and block the potential organ donation. Their loved one's final dying wishes are ignored and the potential to save and transform the lives of others is lost. Sometimes it is because the family didn't know their loved wishes or that they were on the organ donor register.

The family refusal rate is the biggest single identified obstacle to organ donation in the UK and with the percentage of organ donations decreasing, it is vital that families discuss their views on organ donation and that people let their families know that they are on the organ donor register in case they have an untimely death and are then are in a position to save lives.

Five hundred and forty seven families have blocked organ donation since 2010, meaning potential transplants of approximately one thousand two hundred weren't allowed to go ahead. It also means that the potential donors didn't have their final and last wishes fulfilled - that of giving the gift of life or giving a better quality of life to others.

As I well know, there's no greater gift - the final act of donating organs is truly the greatest gift of all and a wonderful legacy to give to others. Not only does an organ donation save and transform the life of the recipient, it affects the lives of those that surround that person, so that this final legacy ripples out and touches many. It is both tragic and sad that the opportunity to do this could ever be stopped by next of kin when it's what their loved one hoped for - that they could make a difference to someone's life or even save it, and more than one person's life too.

Now nurses will be both speaking on the donor's behalf and there will be a leaflet given to families to explain the process and the organ donation will take place even if the family do not consent as long as  a person is registered on NHSBT's organ donor register. This way the donor's expectations that they will save and transform lives will be respected and carried out. It is a more honest approach on behalf of the donor.

Personally, I think this move cannot come too soon. I've always been surprised to know that a family can turn round and veto their loved one's final wish. Even in the event of a tragedy and trying to understand what they will be going through I still find it shocking. I would always like to think that in these circumstances I would be brave and honourable enough to respect my own family members' wishes. 

It is a known fact that families can take some small comfort in knowing that their loved one has saved and transformed lives. It doesn't replace the grief and loss, I know that, but a miracle does come from tragedy and that is a wonderful legacy to leave and donor families must also take great pride in this. 

This week's news is a small step in the right direction, but there is still a long way to go in the UK, regarding openness in speaking about dying matters. Most of us don't want to think of it, don't want to speak of wills, organ donation or organising our affairs in case of death. It is part of the problem and maybe we need to work on changing our thinking and our attitudes to what is a natural course in everyone's life. We shirk away from it and almost pretend it doesn't happen - it makes us uncomfortable.  Death is a fact of life though and happens to us all, so it should be a sensible and natural thing to have these discussions within our families and then everyone is clear. Being more open about our final wishes could go a long way in increasing the numbers on the organ donor register.

Below are links to the press release, the issues on family consent rates on the ODT website,  an interesting piece in the Guardian by fellow transplantee Sharon and of course the link to sign up just in case you already haven't!

NHSBT Press Release

NHSBT Organ Donation and Transplantation

The Guardian

Sign the register and then tell your family

Not Good News for Organ Donation...

Time is moving on and I'm nearing the 22 months post transplant mark now. It is strange because even after all this time you find yourself doing more firsts or realising that you are doing something with much more ease and confidence than you thought you ever would.

It started at my daughter's wedding and I realised I'd been up from 5.30am and didn't stop properly until past midnight. I realised I'd been on my feet most of the day without even thinking! Just getting up at 5.30am would have finished me off pre transplant! Then I'd looked forward to the evening do - there was a live band and plenty of dancing. Dancing - well that was another huge first - dancing all night and joining in properly with everyone. Most people were a bit tipsy and we were all doing lots of crazy dancing, but I was just drunk on being able to dance again and being able to take part in all the madness and fun!

We spent some time just afterwards in the Lake District. Last year I took my kayak out on the lake for the first time at 9 months post transplant, just for a little go and to see if I could. This year I spent two days just paddling up and down in it. I only do it for pleasure and relaxation - I'm no sporting, racing or long distance kayaker -  just a leisurely one, but it was wonderful to be fit enough again and spend time being able to do without a worry or thought.

Then as a last minute thing we decided to go to Italy and off we went without much thought - obviously just the medication to organise - but other than that, off we just went. I couldn't fly or go abroad pre transplant, so travelling abroad always feels special, a complete privilege. If I even went shopping prior to my transplant it was a major planning expedition - timing around drugs and their restrictions, planning for the wheelchair... all that's changed so much now.

My best moments every day on this holiday were when I was swimming - swimming in a pool once more - another first - how fantastic did that feel? Blooming marvellous is all I can say - floating in the water with the sunshine on my face (and the factor 50) was a pretty wonderful feeling. I didn't think I would ever swim again.

It doesn't ever go away what a miracle that all this has been and what a wonderful gift I've received. While we were away I was contacted by NHSBT and BBC to do some interviews, but I was unable to help because we were abroad. I was a bit disappointed I couldn't help. They wanted to interview me because unfortunately the latest news about organ donation isn't so good. The figures for the amount of transplants taking place are down on last year's and it points to the shortage of donors getting worse.

NHSBT News Release

Numbers are down for the first time in 11 years. Partly because of families refusing to donate - family consent rates remain stubbornly below 60%. Partly because there are fewer people dying in circumstances where it is possible to donate. Obviously with fewer donors, the importance of gaining family consent is such a high priority. It is so important to discuss your wishes on organ donation. 90% of families give consent if they know it's what their loved one wanted. 

There are over 7000 people waiting for transplants - real people - some of them are friends. I've also got dear friends who have lost loved ones because they have had to wait so long and became too ill while they waited. It is absolutely heartbreaking. 

So feeling a bit disappointed this time that I hadn't really been able to help, a friend suddenly tweeted that it was great to see us on the NHSBT Facebook page - we had a look and there we were - a picture of us at Sarah's wedding that I'd tweeted with the caption, 'Thanks to my donor, this weekend I saw my daughter marry.' In the end it got over 15000 likes, lots of lovely and encouraging comments and several people commenting they'd signed up because of it. I was pleased, because in a roundabout way it made me feel I'd done my little bit after all.

Just coming back now to all those 'firsts' and having more confidence and energy to do both old and new things - that's what transplant does for people. It is a miracle. Organ donation is the ultimate gift and leaves a lasting legacy. Please sign up to the organ donor register if you haven't yet and please discuss organ donation with your family. It would be wonderful if all those waiting could be given the new chances I've been lucky enough to have. 

More Promoting Organ Donation

Monday and it was back to transplant life once more, back to blood tests and back to the doctor's again. While we had been in Norfolk, I had had to phone the transplant team a few times about my white cell count, which has been too low. I was advised it was still too low and therefore I still need to stay off one of immunosuppressant drugs, myfenax, until they start to increase. I needed to get another blood test so they can check my full blood count and decide what to do.

Last time this happened, I developed a really sore mouth and it got so painful and sore, I ended up having to go to two emmergency doctors, back to Papworth and then needed to be referred to a maxio/facial consultant, who then needed to see me several times before it was sorted out.

By Monday this was all happening again, so trying to nip it in the bud this time, off I went for an emmergency appointment with the GP. Unfortunately my medication changes have got a bit complex, as I had been taken off valganciclovir too. I was on valganciclovir for about ten months after my transplant and it helps protect against CMV virus. They also put me back on it me when my mouth was sore last time after I had just come off it to see if it would help. It can also affect the white blood cells too, so my GP wanted to consult with the transplant team before he prescribed me anything that may interfere with all the drug changes my consultant has tried to make to increase my white cell count. 

So I in the end I needed to wait for my full blood count results, which weren't ready until Friday. My white cell count was still too low, so I still can't start back on the myfenax yet. By staying off the myfenax my white cells should increase and this will help my mouth problems hopefully. On Tuesday I had to have another blood test for CMV virus and I will get those results next week, so things will be reviewed again then. The week after that all the blood tests need repeating again, so it is an ongoing business for a while.

The GP, I saw was a new one and said I was a brave lady having a heart and lung transplant; I replied to him that it's great my heart and lungs are doing fine and it's been amazing, but it's just a shame the rest of me is falling to bits! We had a good laugh, hopefully all will be sorted soon and settle down. 

Wednesday we had a busy morning as we went into John Henry Newman School in Stevenage to talk to 200 year twelve pupils  (lower sixth form) about organ donation and pulmonary hypertension. Rob and I had put a slide show together and had got leaflets and goodies from NHSBT to give out. The talk went really well and quite a few of them signed up straight away to the organ donation register and there was lots of discussion, so we felt it had been a success.

I then did an interview with Bob FM Herts and Home Counties radio speaking about my first year post transplant, my illness and our visit to the school. Following our personal celebrations last week, we wanted to try and mark my transplant anniversary by trying to promote awareness of both pulmonary hypertension and organ donation.

http://www.bobfm.co.uk/news/local-news/knebworth-triple-transplant-survivor-tell-your-family-if-you-want-to-donate-organs/

After the school visit, we have had a request to go back and talk to the year thirteen pupils and have also been asked to visit another school too, so we are going to be busy I think!

The start of my second year post transplant has got off to a good one and the campaign continues on! 

National Transplant Week 2014 #Spellitout

Today is the start of this year's National Transplant Week. Currently there are around 7000 seriously and terminally ill people waiting in hope for a life saving transplant. While they have to wait their condition needs to remain relatively stable or else it is likely they will become too sick to cope with a major transplant operation. 

Because there is a shortage of organ donors, the waiting time can be too long and some patients don't survive. Currently 3 people a day die while waiting for a transplant. I was one of the lucky ones and although I waited exactly 2 years, 1 week and 1 day, I got my life saving transplant. That means while I waited 2214 other patients lost their lives. Yes, absolutely shocking isn't it? 

One reason for the shortage of donors is that less than 30% of the population have actually signed up to be on the organ donor register, although over 90% of the population agree they would accept an organ if they needed a life saving operation. 

Family refusal for an organ donation to go ahead because families do not know their loved one's wishes is also a huge barrier too. When families have had the discussion and know their loved one's wishes then they are much more likely to consent to organ donation. Only 31% of families give consent in these conditions, whereas if families know their loved one's wishes this is raised to 90%. It is so important to let your families know your thoughts on organ donation and so important to get familes talking about organ donation, so the aim of this year's National Transplant Week is to 'Spell it Out' and get families having that 'discussion'.

We volunteered to help NHSBT with their campaign as they were looking for volunteers who have been 
deeply affected by organ donation and we had an interview with the Weekly News, which is a weekly national newspaper and our story was published in Saturday's edition, together with a piece from NHSBT and hopefully it will have reached a lot of readers and got them having that all important discussion. 

 

Last Friday we were invited to take part in a radio show about transplant at BBC 3 Counties Radio in Luton and tell our story about my illness and transplant. The show was broadcast on Sunday and featured others speaking about organ donation from NHSBT, University of Beds and also another transplant patient, who had received a kidney from her husband. It made an interesting programme highlighting many aspects about organ donation and transplant. Again, I hope it reached many listeners, who might now have that discussion with their families. 

http://www.bbc.co.uk/programmes/p021ggcd

If you want to see my story, other real life transplant stories, find out more about National Transplant Week or register to be an organ donor click on the link below: 

http://www.transplantweek.co.uk/personal_stories/case_studies/kath.asp

Don't forget if you want to be an organ donor then tell your family! Spell it Out! 

The influence of a Soap

Last week an episode of Holby City was broadcast by the BBC, which featured organ donation. The episode was watched by more or less five million people so there was a fantastic opportunity there for the BBC to help the NHSBT in their cause to raise awareness of organ donation and transplant issues. We do not usually watch this programme, but switched on in anticipation and expectation that some of the issues surrounding organ donation would be explored and explained to the general public, which would then help towards all the hard work many people and organisations have done to promote awareness.

Soaps can be very influential in this day and age as millions of viewers tune in to them regularly and they can potentially influence a lot of people. They are often used as a vehicle to raise awareness of important causes and can help disseminate any controversy that may surround them.

Unfortunately this particular episode portrayed the organ donation process inaccurately on so many levels, irresponsibly jeopardising all the hard work undertaken to raise awareness of organ donation and increase the numbers on the organ donor register. There are still only a third of the population registered as organ donors, so there is still a long way to go in getting people to understand about organ donation and transplantation and informing the general public so people can make that important decision whether to be an organ donor or not. 

In the programme a potential donor was treated as a commodity and the donor family was bullied into agreeing to organ donation against their wishes, this was done by the actual doctor who wanted to perform a heart transplant to save another one of their patients. The mother of the donor also asked the doctor if she could go to have a look at the the recipient and she got to see her and meet the mother so she could check them out first. A heart transplant then ruthlessly took place when the donor's  mother had said she didn't want to donate her daughter's heart after all and after she was allowed to burst into the operating theatre.

All a very dramatic stuff, and you would expect some big elements of drama in a soap; however, one of the biggest fears that people have when considering organ donation and not understanding the processes and protocols involved, is that should they be in such a state where they may donate organs, doctors will be overzealous in their keenness to get their hands on them and their families feelings may be ridden over and not be considered in all this zest.    

Now a lot of these these myths and concerns have been addressed during recent campaigns such as ITV's 'From the Heart', so people have been able to overcome these ideas and sign up to be organ donors. In reality there is a specialist team and nurse both supporting and informing the family during every single step of the process, starting with making sure the family know and understand fully the condition their loved one is in. Agreement about every step of the process is sought throughout and nothing whatsoever is undertaken if the family feels it is inappropriate for their loved one or doesn't feel right for them. No family would ever be bullied into transplant and no part of the transplant process or a transplant would take place against the families wishes.

So most unfortunately, the BBC has now put these myths about organ donation back into the forefront of people's minds, swaying people to believe it is possible for doctors to break the protocols surrounding both the donor and recipient. I know some will say that it is only a soap opera and a drama and that's what they are all about, but unfortunately people are very easily influenced by them, especially nowadays when it is quite common for soaps to home in on current issues and use them to write their story lines.      

I was pleased to see that NHSBT felt this programme was so far off the truth they needed to issue a statement to clarify matters to potential donors and to people who have already registered. They even reported that some people were taking themselves off the register, because of the programme. Again, people will argue that these people coming off the register must be fickle, but people are genuinely frightened that some of things that were broadcast may happen to them and they begin to wonder if there is truth in them if the BBC, a supposedly world renowned organisation, has broadcast them.

There are strong and watertight protocols surrounding the whole organ donation process so that a situation like this would never happen. Both the donor and recipient have very separate medical teams and our organ donation system is built on complete trust between patients, families and medical staff. 

The BBC responded that they will be following the story up in future episodes - the consultant taking the rap for breaking the transplant protocols. The trouble is many people may not even see this and really it is very damaging to portray every protocol in the book being broken when it would just not be possible to happen in the first place. In this case their storyline is so flawed, it will be difficult to follow it up in any satisfactory manner.

This screening has gone a long way to break down the trust between patients and what actually happens and it was so disappointing to see when you are in the position of waiting for a transplant like me, especially when a soap reaches out to 5 million people and could really help our cause, rather than damaging what we have been trying to achieve. 

I am pleased the NHSBT responded as they did, some people may say it's an over reaction to just a soap story, but when a soap can influence millions and lives are at stake the record needs to be set straight and they have done the right thing. I've also been pleased to see that many complaints have been made to the BBC and that there has been much media attention stirred up, all in the cause of putting the facts straight and none of it good publicity for the makers of Holby City and the BBC.

Of course our expectations of soap operas may be too high and there has been some opposition to the transplant communities' views, one view was printed in a newspaper from a Holby City fan saying, 'it is a soap, soap is all made up, get a life!' Well my answer to that one is, 'I will one day when some very special person enables me to, but thanks to the BBC 'getting a life' could be potentially much longer!' They would feel very different I think if they or any of their family or friends had been affected by organ donation and so would the people involved in the making and broadcasting of this programme.

For our part, we have complained to the BBC and Rob was interviewed by the Welwyn Hatfield Times, here is the report they put in the paper:

http://www.whtimes.co.uk/news/knebworth_couple_blast_bbc_holby_city_show_over_transplant_storm_1_2321736

I was also interviewed too by our local radio Jack FM and they broadcast their radio interview throughout the day on Wednesday.

http://www.106jack.com/news/local-news/transplant-patient-critical-of-holby-citys-portrayal-of-organ-donation/

Both the Welwyn Hatfield Times and Jack FM were more than too happy to help put the record straight and support us in doing so. Hopefully all publicity is good publicity as they say!

NHSBT statement: http://www.organdonation.nhs.uk/newsroom/statements_and_stances/statements/holby_city.asp

The BBC replied to our complaint yesterday and in a nutshell they did not give any apology, just stated that they did not mean to upset anyone and that they had consulted specialists on the issue. The same bog standard reply went to out to many others in the transplant community. So we will just have to carry on campaigning as we have done and try and undo all the damage they have done.  

It is two years since I stayed in hospital for my full transplant assessment and coming up for nearly two years soon since I was listed for transplant. 

If you want to sign up to the organ donor register click on:
http://www.organdonation.nhs.uk/

All Things Medical

We had a hectic weekend taking Rose and her friend Emma and one very loaded up car back to Bournemouth after their reading week at home. It was great to have Rose back and spend lots of time with her.

Lymington Marina

Always eager to explore a new place or two, on the way back we decided to travel through the New Forest. It was perishing cold all weekend, but we drove along the coast and managed to visit Lymington, which is a picturesque and busy sailing town and ferry port. It has a pretty cobbled street, which leads to the marina and a busy high street with Victorian and Georgian buildings some interesting shops, market and cafes. The good thing about visiting at this time of year is that parking is easy and everything is quieter, so everything feels much more manageable than it is when you have to push your way through crowds and hoards of holiday makers.

Coastal drive

Lyndhurst

We then drove through the New Forest, a scenic drive where there is lots of heathland, woodland and wild ponies and visited Lyndhurst, which is known as the capital of the New Forest being a travelling route between the South Coast and Southampton. This is also an historical market town with a narrow high street, Victorian and Edwardian architecture and plenty of shops and cafes. It also has an interesting museum and a church dating from 1860, which are both worth a look.  

Lymington

Exploring new places always helps to keep us busy and take our minds of transplant and the endless waiting. I bought a guide to the New Forest and East Dorset as we will be coming and going to and from this area quite a lot over the next year or two while Rose is at university and I intend to do a lot of exploring and sightseeing!

www.thenewforest.co.uk/

Walled garden, Chewton Glen  

After that busy weekend, it was back to all things medical - there is never much escape, it's like managing a full time job-  it all started with a visit to the warfarin clinic on Tuesday. This time I had hoped to be stable like I have been for the last few weeks and was hoping to get a months reprieve from the clinic, but no such luck, my INR blood test was a little on the high side this week, so I have to go back in two weeks time.

On Wednesday Papworth phoned and gave me a date in March for going back in hospital, I seem to be on the phone to them every few days at the moment with one thing or another and between the the two teams.

I also had to spend a bit of time chasing up the Lister Hospital about the scan I need for my ear, so far they have ignored and failed to respond to the two letters Papworth Hospital have sent them and my first phone call chasing them up. In the end I found out they were simply just ignoring them until I had had my next appointment with the consultant. Now I had specifically been told to cancel this, as I couldn't get my scan in time for it and had rearranged it for April so they could manage to sort the scan out before I went back. So you can imagine my frustration. They have now agreed to do a CT scan instead, which I'm very relieved and pleased about and they have promised it will be done before I am admitted back into Papworth in March. So fingers crossed that that will be sorted out very soon.

Wednesday was also the day I decided that once and for all I need to try and sort out the mess that eczema is causing all over my arms, legs, hands, ears and back, there is not much of me left that is normal nowadays! After talking at length with my PH consultant last week, it was decided that the Epoprostenol is not the cause, but the flushing it causes is really exacerbating it and the diuretics I need are adding to the problem of drying my skin. My many allergies to one thing or another are probably what triggered it, but the drugs I have to have are preventing me getting rid of it so easily and now it is becoming unbearably itchy and sore. So I've another appointment at the doctors to make and in the meantime I'm going to have to spend time religiously creaming my arms, legs and back every day at least three times a day, to try and help things and keep it at bay, just adding to the long list of medical requirements and routines of each day. I don't think I will be able to do much about this problem, as I cannot come off any of these drugs until I get my transplant, so I hope I can just keep it at bay.  

The spare yellow sharp bins make good storage boxes!

Typical months delivery

Thursday saw what we now call 'the drug run' in our house, when I have a months supply of drugs and equipment delivered to make up and maintain my intravenous drug Epoprostrenol. Obviously someone needs to be in the house when it is delivered and there are always quite a few box loads of the stuff and we have had to find storage space for it all. It always takes a while to make a list up of what I actually need for the month, which I have to tell BUPA the week before, in fact my very organised husband does a spreadsheet there is so much stuff! I always get a phone call from a dedicated person at BUPA to ask what I will need for the coming month a week before delivery. Then it arrives in box loads and all needs unpacking, checking carefully that all is correct and then sorting and storing.   

Each month I also have several different tablets to help my condition too, I usually have to take 12 tablets or so a day so I'm positively rattling around, as well as having an intravenous drug whirring round all my blood vessels. The medication includes blood thinners, various diuretics, anti sickness and diarrhoea drugs and these I get on repeat prescription from the doctor and local pharmacist and I have a yearly prescription card, which means I just have to pay £100 a year or so for them, rather than the £50 plus it would cost each month if I paid for them monthly. Friday was time to collect my monthly prescription drugs, where I am almost on first name terms with the pharmacist and staff in the shop. They will get a shock in there one day when I walk in with a new prescription for a whole new set of drugs when I get my transplant.

I suppose you could call me a firm, well seasoned and hardened drug addict now!

We were recently in the local Stevenage Comet newspaper and I couldn't get an online link to our piece so here's a piccy.

We also managed to be in the Welwyn Hatfield Times again this week, as they did a follow up article about the record number of people who had signed up to become organ donors since the ITV 'From the Heart' week. It was great to just keep the story going and hopefully may prompt a few more people to sign up to be organ donors.

http://www.whtimes.co.uk/news/knebworth_mum_s_delight_as_nearly_150_000_join_transplant_register_1_1953440

We also got a lovely card from NHSBT, thanking us for playing a part in their campaign that week, which was a really nice touch.

It is now 528 days that I have been waiting for my transplant, the last 28 days have been hectic, but during that last month of February 84 people will have died while waiting for their transplant and while I have been waiting 1584 will have lost their lives. So if you haven't already, please use the link below and sign up.

If you want to sign up to the organ donor register click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220