The House of Commons

Early morning at Westminster 

Westminster Bridge

We woke up nice and early, I had been a little restless in the night and was by now feeling quite nervous. It has been over two and a half years since I have spoken in front of an audience and not being well added to my nerves and confidence. Once we were up and about though, I was feeling more confident that I would be able to do it. We made an early start, Rob pushing me across Westminster Bridge on what was a cold, but very beautiful morning. There were stunning views of the London Eye and the House of Parliament and the River Thames as we made our way over.

Cromwell Statue near Cromwell Entrance

Passes for the day

We didn't know what to expect really when we got there, but made our way across to the Cromwell Entrance as we had been instructed, asking a policeman or two for directions as we went. Once there, we showed our invitations and the staff could not have been more courteous and pleasant as we were ushered inside. Here we had to go through security and I had to explain to the staff about the metal pump that I have to wear and the needles I was carrying for my drug kit.

 Westminster Hall

We made our way to Westminster Hall, where we were then escorted to Room 11, where the meeting was to take place. It was quite a long way from the entrance, so I was so relieved that we had made all the effort to bring the wheelchair with us. The way to  Room 11 was very wheelchair friendly with ramps and lifts along the way and the staff were really friendly and helpful. As we were making our way, we were surprised to see Baroness Tanni Grey-Thompson go whizzing past in her wheelchair, but there was no way Rob could keep up with her speeding along, after all she is a paralympic wheelchair marathon runner. We have a way to go yet on that score, being quite new to the wheelchair community. Once outside Room 11, we met up with Anne and her dad and it was nice to see a friendly face, which helped me feel more at ease. Our friend Tom also arrived, who had asked to come and support us.

Inside Room 11

We were ushered inside and immediately some members of the panel came and introduced themselves to me  including MP Chris Williamson, who was chairing the meeting. It all felt very friendly and by this time I was feeling a bit more relaxed. The meeting soon got underway and I was pleased that once the chairman had welcomed everyone, he introduced Rob and I to do our bit straight away, which prevented me from getting nervous again. Rob and I spoke of our lives before and after my diagnosis of Pulmonary Hypertension. We explained about what PH is, its symptoms, the drugs and side effects, the impact of it on our lives, what it was like being told I needed a transplant and then living on the transplant list. Rob finished by talking of the need for organ donors and reminding everyone about the latest statistics for the donor register.  

The members of the panel then explained their roles and involvement with organ donation and transplant and gave updates on their relevant fields. Their roles were varied and covered many facets of the 'transplant industry' and their input to the meeting prompted very useful discussion from the audience. Many members of the audience were members of the public like ourselves, who's lives had been profoundly affected by organ donation and transplant.


Some important points came from all the discussions, which will hopefully be taken forward by the panel:

• there are c.7,500 people awaiting a transplant of some kind with some 19 million registered donors. 3 people a day still die needlessly waiting for a transplant; 
• although family consent rates are high at 90% for someone who has previously registered as a donor, these rates drop to a shocking 40% in England for someone who hasn't previously registered to be a donor: a very emotive discussion ensued on this and calls by the audience to get the law changed e.g. "opt out";
• more education is needed to make organ donation part of our culture, a way of life, a social responsibility - something that becomes the norm. Scotland has been very successful at improving rates by blunt and even shocking campaigns and, importantly, has included an awareness of organ donation in the school curriculum; 
• there is a need to continue the work to increase the numbers on the organ donor register through both local and national initiatives and a sharing of best practices;
• although it looked likely that Transplant 2013 would fall short of its target for increasing donor numbers (50%), a healthy percentage increase has still been achieved (34%);
• a lack of funding is impacting on national marketing but in any event the view was more could be done nationally to champion and support local initiatives; 
• local initiatives are usually very effective where someone affected by transplant is known and there is a personal story, and play a huge part in increasing the numbers on the donor register;
• a continuing education and training of hospital staff (even possible targeting ) to ensure that opportunities for donor organs are maximised and not missed; 
• maximising use of social networking and media to publicise organ donation;  
• in certain areas, targeting of prevention measures could be more effective (e.g. 20% of people awaiting liver transplants) have preventable conditions.   

Afterwards we got chance to chat with everyone who had attended the meeting and met some very inspirational people, who were campaigning in varied ways to increase the numbers on the donor register and awareness of organ donation and transplantation.

Anne and I in Westminster Hall

It was an exciting day and has inspired us to think about how we can play our part in increasing awareness of organ donation and transplantation. We had time to catch up with Anne and her dad and we had lunch together in the House of Commons cafe, which was really lovely and then we headed off back home. The rail journey went very smoothly and staff at King's Cross were again really helpful and courteous and couldn't do too much for us. Below are details of some of the people we met and a draft of our speech if you are interested.

 

Some of the people we met: 

                                                                                       Chris Williamson MP
                                                            Chair, All-Party Parliamentary Group for Transplantation

@ChriswMP

Speakers panel:

Dr Paul Murphy

National Clinical Lead for Organ Donation

Keith Rigg

Past President, British Transplantation Society

Jacquie Spencer

Team Manager for South-West organ donation

Professor Martin Lombard

National Clinical Director for liver disease

Dr Katz

 Chief Rabbi’s office

Some of the people making valuable contributions to the debate

Chris Bryon -Edmund , whose daughter Lottie was the youngest baby in the world to survive liver transplant:
www.chipbe.com
Twitter: @ChipBEblog
@iLiveiGive

Sue Reid, Aunt to Will Pope, who is waiting for heart transplant and featured on Tonight's programme, 'Waiting for a Heart'
Twitter: @PopePower
Facebook: Let's Raise Awareness for Will Pope & Organ Donation

Steve Gazzard, who lost his daughter Sarah recently waiting for transplant and is now doing great work increasing donors in Exmouth

Facebook: Steve Gazzard 

Speech Draft

Good morning, my name’s Rob Graham. In a minute or two I will introduce you to my wife, Kathryn, but first I want to give you a little background about us, our life before Kathryn was diagnosed with a serious heart and lung condition and a little bit of an explanation surrounding the condition itself.

Until just over two years ago, we were a fairly average couple with two teenage daughters. I was working full time in the City and Kathryn was a successful full time primary teacher. We enjoyed many normal things as others do: travelling abroad, spending time outdoors - we love the countryside, especially the Lake District where we would walk for hours - gardening and meeting up with family and friends and making the most of having London just half an hour from our doorstep.

In just one day in June 2010 our lives were changed forever when Kathryn was diagnosed with serious heart failure as a result of a previously undetected lung condition. Within six months we both had to give up our careers and many of the hobbies we loved doing.  Kathryn was referred to Papworth Hospital , one of the few specialist hospitals in the country who can treat her disease and, under their care, I am delighted to say that Kath is sufficiently stable for the time being which has enabled us to be here today – that said it has been a major effort on Kathryn’s part to be here - this is in fact our first trip into London together for over 2 and a half years.

We have experienced just about every emotion imaginable. Two of my low points were the day we were told that she had severe heart failure and the day I had to dial 999 after she had an unexplained seizure and I could see her heart pumping against her chest almost like it was out of a cartoon. If I’m being totally honest with you, and I haven’t told my closest friends this, on more than one occasion I thought I was going to lose her. I wouldn’t wish anybody to have to go through similar experiences.

So what is the condition that Kathryn has? Idiopathic Pulmonary Arterial Hypertension. It’s a bit of a mouthful, isn’t it? Most people when they hear this, just pick up on the word “hypertension” and they usually nod knowingly and then tell me that they’ve got a bit of high blood pressure as well. If only and we wish….

In fact PH, as it is known in our world, is a very rare condition and it is generally described as a narrowing and hardening of blood vessels and arteries in the lungs which causes the blood to struggle through, building up high pressures in the pulmonary arteries which carry oxygen to and from the heart. The right side of the heart then comes under considerable strain as it works harder and faster to pump the blood carrying oxygen through the narrowing arteries, and this can eventually result in heart failure.

PH is often secondary to other conditions – blood clots, autoimmune disorders and congenital heart disease or, as in Kathryn’s case, it can start on its own as a result of a genetic mutation and it may, therefore, be potentially hereditary - we are currently partaking in pioneering genetic research to see if our daughters might have the mutated gene. The type of PH that Kathryn has is, unfortunately, without transplantation, incurable and progressive.

There are various drugs that can be used to treat Kathryn’s condition but these only serve to alleviate the symptoms, improve the quality of life and slow down but not stop the progression of the condition.

So what is it like having PH and being on the transplant list? Let me hand you over to the expert – my wife, Kathryn.

Hello everyone, thanks for giving me the opportunity to speak about my condition.

Well, the main symptoms are breathlessness, extreme fatigue, dizziness, fainting and chest pain. These can happen undertaking the simplest of tasks therefore limiting dramatically what you are able to do in a normal day.

I usually need to rest and sit down after ten minutes of mild activity and can only walk at a very slow pace for about ten minutes before I get breathless ad need to sit down. At worst I used to faint doing the simplest of things such as getting out of bed or just bending down as my heart couldn’t cope with the strain. For someone with PH, even climbing the stairs can feel like conquering Everest.

Two years ago and only a few months after diagnosis, my PH symptoms were classed as “end stage” and along with a general host of drugs to help my body – I take around 12-14 tablets a day – I had to be placed on 24/7 intravenous drugs as an emergency when my heart began to give up. I now have a Hickman Line catheter in my chest and carry a small machine, which pumps drugs direct into my heart and pulmonary arteries. It can NEVER be disconnected and I can NEVER be late changing over the drug in my pump machine, which has to be done twice a day.

Making the drug is complex and I need help with this, so not only did I have to become competent at it before I could be discharged from hospital, so did Rob. The line and pump need quite a lot of maintenance which comes with its own set of problems; infection is always a high risk as it could go straight to my heart and lungs and into my bloodstream which could be fatal.  I have had to be admitted to hospital on a number of occasions to rule out infection; I have also spent weeks to-ing and fro-ing to both Papworth and Addenbrook hospitals when I became allergic to some of the equipment.

My medication causes a number of unwelcome side effects: headaches, nausea, stomach upsets, skin complaints, joint pains are but a few and a daily occurrence, but a small price to pay for being alive, though at times they can be extremely debilitating and be just one thing too many.

There was a point last year when my body was struggling to endure an increase in the intravenous medication and that is when the consultant told me I was being referred to the Transplant team at Papworth as she shared my concern about my ability to withstand any further increases and the IV drug is usually the final weapon that they use against PH. 

I was listed for a heart and double lung transplant a few months later and to be sat down with the Transplant Consultant putting all your cards on the table is a harrowing experience. When you get to transplant then you know you have got to the end of the line and it is the very last door to be open to you to overcome your illness. 

For PH patients, from diagnosis at least 50% survive longer than 3 years with treatment, but when we met with the Transplant team, because of the pressures in my heart, it seemed highly probable that I was looking at just 2 years life expectancy. I have now been on the transplant list for 14 months.

Being placed on the list has given me new hope as I try to deal with the daily grind of this illness and the constant hospital visits. I try to be positive about my future and try to enjoy the things that matter most to me now, but all the time there is a feeling of being in ‘no mans land’, that the illness will come back with a vengeance and it will be too late, like it has been for several of my friends, but there is a light in front of me, which is transplant and I might escape from what feels like is a hopeless situation at times.

I can only dream of waking up in a morning and feeling well; to be independent again; being able to go for a proper walk and not having to use a wheelchair; being able to travel abroad and just travel more than an hour away without having to ring the transplant team; not having to cancel one thing after another because I’m too unwell to go and Rob would be pleased if I could do some work in the garden rather than ordering him around. It would be good not to have the catheter in my chest and be able to bathe properly for the first time in years. It would be good to get some purpose back our lives rather than fighting this illness.

In the meantime, I wait in the middle, but with the chronic shortage of donors it is getting harder and harder to keep faith that all may end well.

Despite everything you have heard we actually count ourselves quite fortunate. Diagnosis of this deadly disease has happened to us during middle age, others are not so lucky; PH is just as likely to affect babies, children and young adults as it is those in later life. However, whatever your age there is always something to live for.

There will be many people of all ages and with other diseases sharing our predicament and having a similar story to tell. The fact that we are all here today proves there is a strong will to increase the number of donors signing the register.

At the moment, according to the stats 96% of people would accept an organ if they needed one, but less than 30% of these have actually signed up to the register. We can to some extent understand this complacency as it is often difficult to feel connected to major issues when you are not directly affected by them. We firmly believe that there are many people who would sign up if they were more aware of the issues somehow or if the ‘opt out’ scheme that is being discussed is brought about.

At the same time we do appreciate that organ donation can be a sensitive issue and there are both moral and religious grounds, which need to be respected too.

Tapping into the majority of people though, would not only reduce waiting times for donor organs, but would also help to address less appealing stats such as the fact that 40% of lung donors are smokers. It would also help expand the categories for urgent donation, currently there is no urgent list for people waiting for heart and lung transplants as there is for people who are waiting for heart transplants, pushing us further down the list.

It is seven days since we were asked to speak to this committee, since then 21 people like Kathryn will have died while they wait for organs. I don’t want Kathryn to become one of these statistics. Thank you for listening to us.