Bing bong bing bong – bing bong bing bong went the doorbell.

“Hmmm. I hope they’re up T.”

Scraaatch squeak bang as the bolt was drawn across the lock and the door opened.

“What are you doing here? You’re a bit early aren’t you?”

“WHAT?????”  was my verbal response whereas WTF???????  was bouncing round my brain…

 It was 7.40am. 5 minutes earlier than the time we had agreed to pick up my parents so we were a little early but nothing major. The train was due to leave in 1 hour and we had to make the 30 minute journey to Bath, park the car, get a ticket and get on the train. 60 minutes and this was all doable.


There was my father stood before me in his pyjamas, my mother still snuggled under the duvet covers.

I have never seen my parents move so quickly – 15 minutes and we were in the car (everyone fully clothed) on our way to Bath.

I am sure that Emmeline Pankhurst didn’t get this hassle when she was about to rock her ‘deeds, not words’ rally cry and just imagine if Sheryl Sandberg had decided to lean out rather than in or what if Rosa Parks had been running late and missed the bus that fateful evening in 1955? You see, that day we were meant to be participating in our first public demonstration. Thanks to the vagaries of the human condition (and the inability to set a clock to the correct time!) we were officially running late and the opportunity for our voice to be heard was diminishing rapidly. However, with luck and a following wind, we made our train destined for the Kings Road, London.

Chances are you will have heard absolutely nothing about the demo we joined, along with over 1,500 other people, but this demonstration was for a cause close to my heart. In fact without the cause my heart probably wouldn’t still be beating.

The Royal Brompton Hospital is currently in the middle of a public consultation period into the Congenital Heart Disease (CHD) services it offers by NHS England. You may have read a previous post of mine (Scars, Pioneering Hospitals and Landmark Birthdays) celebrating my 40th milestone so you may have some idea of how precious this hospital is to me. However this hospital is not just precious to me, it is precious to our country, even more so in these times of Brexit uncertainty. We are entering a turbulent period in the UK and, despite all the speculation that occurs every day on the TV and in the newspapers, no one knows if exiting the EU will ultimately be positive or negative for our nation. However one thing is for sure, we should be doing all we can to hold onto, promote and develop the successful organisations we have in this country. From the final shoe factory in Norwich to the craft breweries in Devon, they all need our help and support to ensure that no matter what the politicians agree the UK becomes stronger and more self sufficient. No where more important is this than with our public services.

The NHS is an incredible organisation and The Royal Brompton Hospital is a world class and world leading hospital within it. The Royal Brompton Hospital is a specialist heart and lung hospital. The research it conducts into heart and lung diseases is vital to the development of future treatments. The care it provides to its patients is second to none. Its mortality rates are ridiculously low considering the complexities of the cases it all too often has to undertake. It attracts patients and staff from all over the world. It treats all classes, all genders and all ages. The current threat to its CHD services puts many other departments under threat too – the children’s Intensive Care, the Cystic Fibrosis clinics… If the CHD service closes, ultimately the entire hospital will become unviable.

NHS England Managers are spearheading the ridiculous proposal to close the CHD services and, at present, they have no plan for the 12,500 CHD patients currently on the Royal Brompton register. In times when we are told that the NHS is at breaking point and that general hospitals cannot cope with demand, NHS England are looking to add a further 12,500 patients, with very specific needs into the general mix. They are not just risking people’s health they are risking people’s lives.

NHS England is looking to destroy a service that has taken a generation to build. When I was referred to the Royal Brompton in 1976 the chances for my survival were minimal. Today around 8 out of every 1,000 babies are born with some kind of Congenital Heart Defect. In part thanks to the expertise and knowledge that the Royal Brompton has built up and passed on to other cardiac centres, a baby born today with the same condition as me faces a much higher survival rate. For example in the 4 year period between 1979 and 1983 an average of 1,300 children born with CHD died each year whereas between 2004 and 2008 that figure had dropped to ‘just’ 223 children each year. However with more children surviving, that means there are more adults like me and the other 12,499 CHD Brompton patients who require ongoing monitoring and care. I attend annual check ups at the clinic, I have had three rounds of open heart surgery and I will require more surgery in around 15 years time, if not before. We, the other CHD patients and I, require a lifetime of care. The problem is that we don’t need general care we need specialist care and if that specialist knowledge is no longer there the chances of our survival and continued good health is reduced.

NHS England suggest that the co-location of services is vital to producing positive outcomes for patients. This means that because The Royal Brompton is a specialist hospital there are some services it does not have on site and it is this technicality that is threatening the future of the whole hospital. The Royal Brompton has however developed an exemplary, woking, relationship with the Chelsea and Westminster Hospital just half a mile down the road. This relationship works so that if a patient at the Royal Brompton requires additional attention surgeons and/or doctors can be brought in immediately, and vice versa. When I fell pregnant with my children I was referred, through the Royal Brompton CHD clinic, to the Chelsea and Westminster maternity unit. Through their relationship with the Royal Brompton they have a team who specialise in pregnancy for patients with CHD. This cross-hospital liaison worked fabulously and I had complete faith in the service provided to both me and my unborn children.

Centres of excellence such at The Royal Brompton Hospital cannot be put on closure lists unless there is a real and proven need for such course of action. I can understand a closure being called for if mortality rates were inexplicably high, or if staff levels could not be maintained at an optimum level thereby risking patient outcomes. But in this case it is simply not true. The Royal Brompton is amazing and a real testament to the ethos of the NHS providing good healthcare to all regardless of wealth. This is why I cannot stand by and let it be destroyed by bureaucrats who do not understand the real life consequences of their actions.

So, that explains why I was sat on a train going from Bath to London at 8.40am on a Saturday morning with my 9 year old daughter and my 70 (and nearly 70) year old parents. We were going to make a stand. To teach my daughter that sometimes it isn’t enough to have an opinion. Sometimes you have to make your opinion heard. To take a stand.

I have never been an activitist, none of my family have. Indeed I have grown up with a generation of people who perhaps have not particularly needed to be activists. I was born in the 1970’s when general female emancipation in the UK was well underway, I was too young to remember the Winter of Discontent and then the 80’s happened, the UK had a female Prime Minister and glass ceilings started to crack (and yes, I know there is still work to be done, but the ground works had begun). I have grown up in a generation who possess an air of general disillusionment with government and authority and yet who seem to lack the motivation for full on social activism. What was the point of protesting if nothing changed. This attitude is still prevalent in our Millenials although I sense a change is occurring thanks to Social Media and the ability to engage thousands, instantly, in whatever cause you are championing. We are starting wonder if perhaps changes can be brought about if enough people are engaged. This was why I participated in the Royal Brompton March. Unless we show our discontent, unless we challenge proposals that make no logical sense, the powers that be will just carry on regardless. We have to make NHS Managers accountable, they have to justify their decisions so that they are watertight and proven to be for the benefit of the people for whom their changes would directly affect.

Finally, at the age of 40 I have realised that simply having a voice isn’t enough, it is making our voice heard that really counts.

“Deeds, not words,” my friends.

Deeds, not words.

If you would like to find out more about The Royal Brompton Hospital and the NHS England CHD proposals please take a look at the selection of links below…

Royal Brompton & Harefield NHS Trust

RBH Charity

NHS England Public Consultation

News reports:

Royal Brompton March

MPs Call on Hunt

NHS Co-Location – no evidence