Monday, 26 December 2011

On the 2nd day of Christmas ...

It seems obvious for the 2nd day to talk about twins. I know several sets of twins who both have Down's Syndrome, but today I'd like to mention a family who have one twin who could use our thought and prayers.

May I introduce the Hext twins, 5 year old Harvey and Spencer who you may have seen on this years Noel's Christmas Presents when their family went on a trip to Lapland and the boys met another set of twins, Jedward.

Harvey and Spencer Hext
Spencer and Harvey are identical twins who have Downs syndrome, which makes them fairly unique as there are only a handful in the UK, but Harvey is even more unique. In June 2010 he was diagnosed with stage 4 Neuroblastoma, a very aggresive childhood cancer and he is the first documented patient in the world to have Down's syndrome and be treated for it, meaning that there are no comparable reference points for his treatments, as the medical team have no experience on the amounts of drugs his modified genetic makeup will cope with.

Harvey has amazed his family and his doctors with the way he has coped with the chemotherapy and MIBG therapy he has been given, he has also recovered very well from a 14hr operation to remove the primary tumour in his stomach, but throughout the awful treatment he has had to endure, he has remained spirited and inspirational. Sadly though,

Harvey has not responded to the chemotherapy as everyone had hoped he would and although his consultants are still treating Harvey's cancer as cureable at the moment, treatments in the UK for Neuroblastoma are limited so his family are currently looking to raise £300,000 as it is most probable Harvey will need treatment abroad that is not covered by the NHS.

If you would like to donate to Harveys fund please do so using this link FAN Harvey Hext  (Donating through this page is simple, quick and secure and if you are a UK taxpayer and give Gift Aid consent the charity will receive extra at no cost to you.)

Sunday, 25 December 2011

On the 1st day of Christmas ...

I'm hoping to find time to make a blog post every day of the 12 days of Christmas, primarily about friends with Down's Syndrome, but I'd like to start today with a short blog in honour of my mum.  Right from the time my special boy was born, she accepted him without question and was supportive of my work with Down's Heart Group.  So I think it only fitting that I start with her as she was the primary influence of my formative years and instilled in me the values of acceptance and inclusion that are at the root of everything I do.

A week ago the wonderful lady that brought me into the world had her 88th birthday and today we shared an hour of companionship together at the care home where she has been resident for the last 9 months.  We sat and chatted as she opened the cards and presents that I had taken in for her and whilst it didn't match the level of communication that we shared in the past, I was thankful that today she was at least aware of who I am.  

Mum and I during my visit today
The past 12-18 months have been a difficult journey for me as I've had to come to terms with her diagnosis of dementia and the rapid deterioration she has experienced.  It's been hard to watch someone who was so fiercely independent and capable become totally reliant on assistance from carers and harder still to witness her memory loss which means that much of the time she has no idea who I am.  But, I'm trying to see something positive in all of this and perhaps my experience will in some way help me support families who sadly have to face a diagnosis of Alzheimers in their loved one with Down's Syndrome.

I started out nearly 22 years ago with the idea of using my experience of having Daniel -  getting the diagnosis, going through the bowel and heart surgeries and his death - to try and help other parents in some way, so I'm trying to approach mum's diagnosis in the same way.  Mum's thankfully unaware of her situation which I am so grateful for and from my point of view I'm trying to see what I am learning as something which gives me firsthand knowledge that I can hopefully pass on to others. 


Sunday, 13 November 2011

To my beautiful boy on your 22nd angel anniversary

A letter to my angel in heaven who shared such a brief time with us and yet made such a huge impact on our whole family.

The t-shirt from my fundraiser in 2010 to mark my 50th and your 21st
Well, as usual at this time of year, I'm having a hard time coping with the poppies that everyone is wearing and at least one stranger has felt the need to point out my lack of respect for not wearing one. 

I'm usually quite happy to talk to anyone about you (even losing you), but this is the one time of year that it's just too hard and I wish people wouldn't be so quick to judge.  I totally respect Remembrance Day and what is stands for, but it's just such a strong part of my memory of the hardest day of my life.  The Royal Albert Hall service was the last thing your dad and I watched on television before going to bed and being woken unexpectedly by that call from the hospital, so even now I can't handle that link -it just brings back that memory so vividly of being told were gone!

So many flowers for such a little person

I was laying in bed last night thinking about you and the fact that I carried you and was your life support for longer than you were actually with us and how so suddenly and unexpectedly you were gone.  I'd known you were poorly but had never really thought that we would lose you and suddenly after 100 days you were gone.  How could I cope with that?  Why had it happened?  What sense did it make?  I went through the motions, largely for your big brother, Andrew, who was after all only 18 months old himself.  He had spent a lot of time those previous weeks visiting you, he knew you belonged to us and idolised 'his baby' and somehow I had to explain your going in a way that he could understand when I couldn't really understand it myself. 
You and your big brother Andrew - a rare photo of you awake

I felt so alone and surrounded by people who didn't understand what I was feeling and my lifeline was Down's Heart Group where I found other bereaved parents to talk to, so I guess it was only natural that I should eventually want to try and give something back.  Somehow it seemed to make some kind of sense of your short life to use what I had experienced to try and support other parents going through the same thing and the organisation was an obvious way to do that.

Well that was all many years ago now - I carried out my first official Down's Heart Group task on April 22nd 1990 (I remember the date as it was Andrew's 2nd birthday) and I had no idea back then of the incredible journey I was embarking on.  It has been amazing: I've travelled to different countries, met famous people, been on TV, radio and in the papers, but MOST OF ALL I've met the most amazing people who all share one thing in common, an acceptance, understanding and love of people with Down's Syndrome. 

About 6 hours old - the first time I really got to hold you

And without you Daniel, it would never have happened.  I am so grateful that we had no idea of your problems before you were born because if I am honest, I know there is a chance that had we known, we might have made a choice to end your life in the womb given your medical issues and the potential impact on your big brother.  I'm certain that I would have been convinced that there was no way we would be able to cope with it all, but of course we did because you were our baby, our precious boy and we knew from the start that no matter what we would love you and fight for you as hard as we could.  It's amazing what hidden strength you have when you need it!

Your emergency Christening waiting for the ambulance to Great Ormond Street Hospital

You changed my life Daniel - at first it was hard to cope with the pain of your loss, but now I can look back over the past 22 years and whilst it still hurts to think of you and wonder what you would be like now, I have so many positive memories to counter it with.  Thank you for introducing me to this wonderful community, where I have met so many inspirational people who have enriched my life - you truly were a gift, I cherish my memories of our short time together and I am honoured to be your mum.

Dedicated to the boy who started me on this incredible journey, 
to all the wonderful individuals and their families that I have met over the past 22 years, those I've hopefully yet to meet and with special love and hugs to all those whose loved ones have also earned their angel wings.  

Friday, 21 October 2011

Language and how we each use it

All the media attention surrounding Ricky Gervais got me thinking last night, particularly about my own use of language and how that has changed over the years.

When I was a child, my cousins whom I spent lots of time with, lived near to the local 'mental hospital' as it was called back then.  It was the typical building of it's type, large. cold and imposing behind high walls and as a small child I remember being scared of going past as our understanding at that time was that it housed 'mad people', which to our young minds and limited knowledge meant people the likes of Myra Hindley who would surely murder us if they could get to us.  Occasionally one of the residents would escape from the confines of the grounds somehow and the reporting in the local press only added to our misunderstanding as they talked of 'escaped inmates' being 'potentially dangerous'.

By the time I reached my early teens, I had come to a better understanding and believed that the occupants were people who have mental health issues and presented as much of a  danger to themselves as others if allowed to wander about in our community.  Then I had an experience that provided me with a greater insight when my dad had some kind of 'turn' (I really can't be more specific than that as the doctors never could provide an explanation) and suddenly seemed to forget about the past 20 odd years of his life.  He was initially admitted to the psychiatric ward at our local hospital and then transferred to a London hospital for further testing, during which he suddenly came out of whatever was happening and after several weeks of complete memory loss, was completely back to his old self at the complete bafflement of the medics.  

This was my enlightenment to the fact that mental health issues can affect anyone and that referring to 'nutters and lunatics' was not something that was acceptable - those words along with others such as 'loonybin' were removed from my vocabulary as I became more aware of the potential impact that such words might have on those around me who might have links with individuals to whom these words would commonly be applied.  I guess the experience with my dad (actually my step-dad but the only father I had ever known) and also the fact that my mum had suffered so much, even from her own family due to my illegitimacy, made me very conscious of how easy it is to cause distress to others, even unintentionally.

"I was a student nurse at Leavesden Hospital in the early 1970s. The wards were 
big, tall, bleak buildings three floors high. They were cold inside with tiled walls."  
Some years later life added another lesson for me.  We had been through the grief of learning his diagnosis and that he had major heart and bowel issues, come through that and accepted him as our son only to then have to endure the further grief of his loss when he was 100 days old.  It was a major life changing experience that pretty harshly pointed out the attitudes of some people whom we had previously thought of as friends and it made me once again reconsider how my words and actions might impact on those around me.  I knew that whilst I would doubtless make mistakes and say things that would upset and offend others, I would make a sincere effort to be aware of my use of language and to actively encourage others to do the same by politely pointing out when words and phrases were used that could be upsetting in certain contexts. (not to necessarily stop people using them, but to make them aware of situations where they might want to choose an alternative).

It was in relation to our son that some years after his death, Leavesden Hospital was to enter my thoughts again.  My aunt had actually worked nights there as a nurse when I was young and at a family gathering we got to talking about Daniel and Down's Syndrome at which point she said to me "of course I nursed lots of people with Down's at Leavesden".  I was stunned, not because I was unaware of the fact that people with learning disabilities had been institutionalised, but I have never made that connection in my head with a group of people that I had now come to understand and feel a strong connection with and that terrible, imposing, prison like building of my past.  She told me some heartrending stories of how the staff were not allowed to interact with them, how many had been there since they were small children and never had visitors - it was very distressing to hear, but even more so to think that it had been happening so close to me and in my lifetime.

When you read these things, they often feel quite distant and remote,  
but this took place just 30 odd years ago and involved a much loved aunt 
- I was deeply shocked at that realisation. The hospital finally closed in 1995.

So, getting back to language and it's use, I appreciate that it would be a mammoth task for everyone to be fully aware of the potential issues surrounding the use of every word, particularly in an area that they have no personal experience of, but I do think that if it is pointed out to you that your usage of a particaulr word or phrase is causing distress to others, you have a clear choice to either stop using the word or to totally ignore the feelings of other people.  Perhaps if only one person is upset by the word, then you can argue that they are being over-sensitive and feel comfortable disregarding them, but when a good number of people express concerns, I personally think you have a moral duty to think about your actions.

I am just a small insignificant person in this world, but I feel obliged to consider and respect my fellow humans, regardless of any differences in race, colour, religion etc.  I don't have to agree with them, but I should afford them the same courtesies that I would expect from them and whilst I may not always get it right, I will strive to do my best and apologise for my failures when they happen.   In my humble opinion, people that are in the public eye have generally been placed there by the smaller more insignificant amongst us and as such I feel that those people also have a duty to consider and respect others, in fact probably more so.  Many well known individuals have used their success to actively support charitable efforts and champion the cause of others who are less fortunate, it's a shame that others seem intent on just the opposite.

Thursday, 20 October 2011

Ricky Gervais and his use of the word "mong"

I have of course been involved in commenting and expressing concern about this well known comedian's use of this word which he says has a new meaning and has nothing to do with Down's Syndrome, but which is seen as highly offensive by many people who have a connection with the condition.

As well as those who have found it offensive there have been many others who have spoken out about freedom of speech and oversensitivity of certain groups - this morning I took part in a debate on Radio 5 Live Breakfast Your Call (on iPlayer for next 7days)

Well, I'm sorry, but I don't find it funny to laugh at the misfortune of others - even some of those "You've been framed" videos where people have agreed to showing their accidents make me say ouch and feel sorry for them. If I use a word or phrase that is distressing to someone without realising and they point it out to me, I will try really hard to never to do it again and if it slips out I feel terrible.

When possible I try tactfully to point out to people that we refer to people with DS as people first ie "a person with DS" not "a DS person" and I would listen and respond to anything similar someone explained to me about another condition. We can't be expected to know everything about the use of different words in other countries or different fields of interest, but that doesn't mean we can choose to ignore the affect they have on others when it is pointed out to us.

In 2009 I experienced something that many of you may never do and it got me thinking. I was for the vast majority of a 10 day visit to Nigeria, the only white person and as such was the object of quite a lot of interest from the public. No-one did or said anything hurtful or offensive to me and I never felt in any way threatened, but that did not stop me feeling that all eyes were on me and that I was being singled out for attention - I realised that it must be like that pretty much every day for someone with DS once they are old enough to be aware that they are different. It must be a pretty hard thing to live with all your life, even without direct taunting and with the love of family and friends around you.

Ours is a sad society when we feel it is acceptable to go around making fun out of people who are 'different' despite the fact that we are so called 'educated and enlightened' - surely we should be realising that everyone has feelings, everyone wants to be loved and to belong and EACH and EVERY one of us should be trying to promote that, whoever we are, but more so if we are in the public eye and can share that example with so many others through our work.

Someone like Ricky Gervais is in a position where he could do so much good if he chose to, in fact some people claim that he has already done a lot to highlight disability issues, in which case why does he not seem able to understand why these comments are so upsetting to our community and at least refrain from further use or apologise?  I certainly wish I had his money and opportunities to make a difference, but if he doesn't want to help, then he could at least stop hurting those we love!

Update October 22nd 
Well it appears that Ricky Gervais has finally realised how upsetting this has been for many people.  He still says he meant no harm and had not realised that anyone still linked the word with Down's Syndrome, but he has apologised directly to Nicky Clark who was one of those who spoke out about the distress to families.  She posted details on her blog Nicky Clark and last night the Daily Mail online posted an article about the apology.  Hopefully that is the last we hear of Mr Gervais using the word and perhaps he will react a little sooner in future if he unintentionally uses a word that causes upset and distress to a group of people.  Thank you Ricky for being a big enough man to say sorry.

Wednesday, 7 September 2011

World Down Syndrome Day - asking United Nations for official recognition

This is going to be a very short post, but I have some important news and a request that I wanted to share.

Today, 7th September 2011, representatives of Down Syndrome International (DSi) are at the United Nations asking them to officially recognise March 21st each year as World Down Syndrome DayThere is an online petition where you can register your support for this and we need as many people as possible to sign up and pass the message on to other parents, relatives and support groups across the world.

     127 signatures at 9am GMT on 7th September 2011

(Link takes you straight to the petition, scroll down to signature box. Sign in with email or Facebook, leave a comment if you like (when you click the 'sign now' link you will be taken to page that asks if you would like to donate to keep the website running but you can just leave at that point and your signature will be registered).

And then make sure you join the World Down Syndrome Day group on Facebook and sign up for the World Down Syndrome Day 2012 event on Facebook and join us in making 2012 a truly memorable worldwide celebration on 21st March 2012!

Friday, 26 August 2011

Reflections on the past year

I guess many people find themselves on birthdays, reflecting on the events and changes of the past year, but I have to say it's unusual for me.  Normally I tend to spend August 2nd trying to be positive and upbeat for my daughter and then as night falls it's usual for my mind to turn to 1989 and the events that were to change my life forever.  Maybe this year was different, perhaps because there have been some major changes in my life over the past 12 months or maybe it's because this year my beautiful daughter Sarah turned 18 and the baby of my brood is no longer a child?

The night of her birthday we sat and had a heart to heart and for the first time I discovered that as hard as I've tried over the years not to let it, her birthday has always been overshadowed by her brother's birthday the next day.  At first I was deeply upset to think that I had let that happen, but as we talked I began to realise that perhaps it was inevitable whatever we did as she is a sensitive and passionate young lady who has been brought up around people with Down's Syndrome and has a knowledge and understanding way beyond most of her friends.  I hope that she never experiences the loss of a child, but somehow I feel that if she did she would already be partly prepared to deal with it.  Growing up with the knowledge and loss of her brother and with them having birthdays so close to each other, she has a much greater understanding of that loss than others who have not experienced it.

So back to the past year and the changes, it's been a tough one in many ways with all the issues surrounding my mum, the diagnosis and quick progression of her dementia and all the difficult decisions that required.  Like for so many other people, finances have been a big concern and not only personally but for the Down's Heart Group too, which in itself places additional anxiety on our family.  There have been incidents where I have been verbally abused and my intentions and commitment questioned to the extent that I have considered 'throwing in the towel' and moving on to another job, but then almost like magic someone comes forward that needs help and support, my faith is renewed again by the comments of my friends in our very special global community and I am able to move forward again.

22 years ago at a time when I felt most alone and in despair, I found support from others who had traveled the road before me and even now it is the members of the Down's Syndrome community who lift me up when I am feeling low - our children are truly a unique and wonderful gift and the bond between our global 'family' is a strong and powerful one for which I am forever grateful.  When I volunteered to help Down's Heart Group all those years ago I had no idea of where that would take me, I just felt that if I could use my experience to help one family it would make some sense out of Daniel's short life. 

I hope that I've managed a little more than that over the years, because I know that I have gained so much from my involvement with this community and that I owe so much more to my wonderful friends that make it up.

In Memory of our Son

Many times the hour-glass has turned
Since you left this place.
So many times our hearts have yearned
Once more to see your face.

So brief your visit here below,
A fleeting time on Earth.
Sometimes it’s hard to understand
The reason for your birth.

But we are deeply honoured,
And very, very glad,
That someone up in Heaven
Made us your Mum and Dad.

You taught us many lessons.
Showed us a different way.
You’re always in our thoughts,
Every single day.

Friday, 12 August 2011

My bid to carry the Olympic flame on behalf of the global Down's Syndrome community

Life is so hectic at the minute I'm not sure why I've decided to add to it by trying to do this as well, but it would be an INCREDIBLE HONOUR to represent the global DS community and raise awareness in this way if I were chosen.
Here's the video I made as part of my bid - it's not very good as there was a set format and it was difficult to get photos that would work, but hopefully it gives an idea of the message I'm trying to get across.
If you would like to support my bid, I think you can 'like' it from anywhere in the world (just click the 'like' button under the photo of me with pink hair. To post a comment you have to register either through FB or directly but you can only do it if you are in the UK (although I think a few people have fibbed) - then scroll down below the green box of 'My hopes and dreams" to the yellow/orange box that says "I like Penny's nomination because..." click in there and you have 140 characters to post your comment.

THANK YOU all so much! I'm sure I won't be picked with all the energetic young people that are entered, but perhaps the pink hair will get me noticed and I SO WANT to do this for all my wonderful friends around the world. Perhaps my t-shirt should say "People with DS rock!" or how about "I don't just love some1 with an extra Chromosome - I love them ALL!"

Suggestions will be requested if I am successful.
 Link to my entry

Tuesday, 24 May 2011

It's so easy to help Down's Heart Group and it needn't cost you money!

47% of babies born with Down Syndrome have a congenital heart condition. 

See how easy it is to help Down's Heart Group support a better life for them by visiting our fundraising page.

Sunday, 22 May 2011

Forgotten memories

Since my mum went into residential care due to her dementia, I've been going through sorting out her things, old photos etc. and I've found lots of bits and pieces that she'd kept that I'd forgotten all about, including a poem I wrote some time ago. 

Over the years I've quite often found that Daniel's birthday and anniversary spur me into writing poetry.  I've kept copies of lots of them, but not this one, so I was surprised to find it amongst mum's keepsakes.  

Natures Gift

Some of the most beautiful things in nature
Have but a fleeting existence in time,
Yet those who are privileged to know them
Cannot fail to be moved by the experience.

Think of the exotic butterfly, starting off
As a hairy caterpillar, then as a papery chrysalis
Finally to emerge in all its glorious splendour
For such a short moment of its life.

Just when all its hidden beauty is revealed
It is snatched away for ever, when only a few
Will have been touched by its tragic story,
But for them it will have a lasting effect.

So it is when a special child joins your family.
At first it may be difficult to see beyond the problems
But in time their true inner beauty will be revealed
And fill all who come to know them with wonder.

But like the most glorious things in nature
Their visit may only be brief - just time for us to learn.
Remember with joy and love the gift they gave to you
For it is that which is important, not their length of stay.

Take strength and courage from the lessons you have learnt,
And know that you have been blessed, for you have seen
The inner beauty that many others cannot see.
You can look beyond the disability and take pride
In knowing the child will always be part of your family.

Tuesday, 5 April 2011

More on Safe and Sustainable - proposed changes to children's heart surgery service in the UK

Spent this morning at a Health Impact Assessment stakeholder forum where we discussed the impacts, mitigations and opportunities of the proposed changes.  As many people as possible need to provide their comments using the response form before July 1st, this is your opportunity to feed into the process.

Before you complete the form, you might find it helpful to at least take a look at "Safe and Sustainable: A New Vision for Children's Congenital Heart Services in England - Consultation Document" to increase your understanding of what the process is trying to achieve and how they arrived at the four options that are under consideration.  Although you may have read media reports that suggest this a cost cutting exercise, it's important that you understand that 
professional associations and national parent groups, who take a global
view of these issues, have repeatedly called for a review of children’s heart surgery services.
Although this is a direct quote from the consultation document, I include it here because I know from personal involvement that this statement is true.  The aim of this whole process is ensure that this is a national service, with national standards that ensure that all children get the very best care wherever that is provided.  Whilst the majority of families are already happy with the care their child is receiving, realistically most have no experience of another unit with which to compare, but national support groups are ideally placed to see a more national picture and have been heavily involved in seeking these changes.
Parents are naturally concerned about how these changes will affect them personally, but in order to make the best decisions, it is vital that everyone looks at the proposals impartially so that the focus is on the most important issue, that of giving children the very best chance in life.  When thinking about these changes we also need to understand that they are not recommending closure of any units, the proposal is only to reduce the number that actually undertake surgical procedures, which would mean that families will only potentially have further to travel when a child is having surgery and for nearly 98% that will be only once or maybe twice in their life.

We need to ensure that during these times, families are given better support to overcome the difficulties that may be compounded by being further from home but whilst recognising these and other issues, we cannot lose sight of the evidence that supports the need for change.  Evidence that shows a relationship between the number of procedures and surgeon undertakes each year and the outcomes for the children involved, not just looking at mortality but also morbidity.

It's also worth remembering that whilst this is a national process, it will not be the first time that a heart unit has stopped carrying out surgical procedures yet remained as a cardiac centre.  During my 20 years involvement I have seen several similar changes - in Scotland, Royal Hospital for Sick Children in Edinburgh sends patients to Yorkhill in Glasgow for surgery, Manchester Children's Hospital uses Alder Hey Children's Hospital in Liverpool, the University Hospital of Wales in Cariff sends patients to Bristol Children's Hospital and when the Royal Brompton and Harefield Hospitals combined, surgery stopped at Harefield.

So take a look at the consultation document, at the very least read section 2 and then make sure that you complete the response form online or request a hard copy and check out details of the consultation events for one in your area where you will have the opportunity to hear the proposals in more detail and discuss your personal concerns.


Wednesday, 23 March 2011

Safe and Sustainable - proposed changes to children's heart surgery service in the UK

Well I've purposely stayed away from this subject till now because I understand how high emotions are running in many parts of the UK over these proposed changes, but about a week ago there was a comment on the DS UK list that prompted me to write something down.

As I understand it there is a huge national review of heart services being undertaken at the moment.  I'm sure Penny will give you a better idea of  what is happening.  I believe it's about improvement, and giving all children an equal chance of survival and a good outcome, no matter where they live.

So as the bulk of it was already written, I figured I might as well post it here on my blog too.  Hopefully it may clarify the situation for some people, at least as far as my position on the changes and why I have not accepted invitations to sign up to campaigns to save individuals units.  I must stress that these are my personal opinions, but I do not feel it is inappropriate for me as Director of Down's Heart Group to express them here as they are based on a national perspective after over 20 years working and liaising with all of the UK units and not reflective of my own brief personal experiences at one individual unit in 1989.  I have met very many of the medical staff who may be affected by these changes and heard firsthand accounts from parents about probably all of them - they are definitely amongst the most gifted and dedicated cardiac teams in the world and we need to take steps to ensure that the UK retains that expertise.  (only a few days ago one of our surgeons was mentioned in an Olivier Awards acceptance speech).

And I'd like to thank the surgeon who kept my baby daughter alive: Choreographer tells the harrowing story behind his awards acceptance speech

Getting back to 'Safe and Sustainable', I think I have a pretty good understanding of what this is all about, having been involved in much of the consultation process that has been going on (for far too long now) and attended all the general meetings.  What you have to remember is this is not something that happened overnight, originally it all started about 10 years ago and the whole point is not a cost cutting exercise as it has been referred to.  It is not actually something that has been government led, it came out of some of the parent groups asking why a few of the recommendations that came out of the 'Bristol Inquiry' had still not been addressed, particularly in relation to ensuring the best clinical outcomes for children undergoing heart surgery. 
One of the facts that had been established from research was that there is a correlation between the success rates (both mortality and morbidity) and the number of procedures a surgeon in involved in - basically you need to keep practising to keep up your skills. In some units there is not the capacity for an agreed minimum of operations to take place in a year, so these surgeons are not getting the opportunity to fulfil the criteria and maintain their skill levels.

There were also issues around units with only one surgeon and the problems encountered when they were on holiday or off sick as well as training and progression - with a team of 3 or more surgeons in one unit, it is possible to have one very experienced who mentors other colleagues of varying experience and there is a continual progression as the more senior ones retire. There is a real lack of paediatric cardiac surgeons here in the UK and a few of the really excellent ones have recently retired or will soon do so and if things continue the way they are we will be looking for more and more surgeons from overseas.

The consultants and cardiac teams themselves recognise all of this and whilst naturally none of them wants their own unit to close, they have pretty much all been on-board with the rationale behind 'Safe and Sustainable' since the beginning.

So why has it taken so long? Well one of the reasons was the last General Election when non of the politicians wanted to rock the boat in their own constituencies and since then it is because there has been so much work undertaken in consultation and visiting units etc. to find the best way forward. In an ideal world the Commissioners would agree how many units were needed, what facilities they needed and how to distribute them geographically and we would build 6 or 7 brand new hospitals to meet that need. But of course that's not an option, so a great deal of work has gone into looking at all the possible different options and finally coming up with 4 for further consultation. I attended the meeting about a month ago where there was an hour long presentation explaining the whole process that was gone through and there is a document you can view on-line that details it all (but I'll warn you it's about an inch thick).

So to cut to the chase and clarify - some units will stop providing surgery, but they will continue to do everything else they do and there are also plans to increase knowledge locally with designated paediatricians with cardiac specialist training. In making the suggestions they have, they have taken into consideration many things including:

       * number of procedures
       * access to other services as many kids have other medical
         issues too
       * retrieval times for sick kids
       * national specialist services such as transplantation and ECMO
         and whether these could be relocated
       * population density

and many more. Whilst we would all like to have a specialist centre on our doorstep and being close to home is desirable during such a traumatic event as your child having heart surgery, there are many parents, who for varying reasons, have travelled the length of the country for their child's operation. Some defects are so rare that only one or two units have experience of repairing them, that some families already have no option - if your child needs a transplant they currently go to the Freeman in Newcastle or Great Ormond Street in London. Cardiac surgery on congenital defects is quite different to that in older patients with acquired issues and then you have to add the size of the heart into the equation and the specialist intensive care required afterwards and it becomes obvious that this is not a procedure that can be done in all local units, so depending on where you live you may already have to travel some distance to a cardiac centre.

I don't doubt that these changes will sadly result in some children dying who might otherwise have survived if their local unit had remained, but I believe that we have to weight against this not only the number of children that will survive who wouldn't without these changes, but also the quality of life of those who survive, because it's a harsh fact that whilst some kids survive as a result of surgery, during the process they sustain neurological damage.

The whole idea of 'Safe and Sustainable' is to build on the fantastic service that we already have, but to look to the future and how we can ensure that the service not only survives for future generations but also improves. We have to take what was learnt from the Bristol and Brompton Inquiries, recent issues surrounding Oxford and do everything that we can to ensure that these mistakes cannot happen again - we cannot be complacent and say "it's working well so leave it alone", we have to be constantly looking to develop and improve in-line with the progress constantly happening in the field of congenital heart disease.

Well that's me off my soapbox - I hope that perhaps it helps explain a little more to some parents.   Yes a move will be disruptive I know and you have an affiliation with your unit and it's staff (I fully appreciate that - I feel the same about the cardiologist and surgeon that treated my son), but if you can step back and take a more national perspective, hopefully you will see the rationale behind these changes.

if you want to read more check out

Safe and Sustainable website

Children's Heart Federation website

Central Cardiac Audit Database

Sunday, 20 March 2011

March 21st - World Down Syndrome Day

Well it's been so long since I managed to post.  Life has been busy especially getting to grips with my mum's dementia and her having to into a home, but I also fitted in another trip to Nigeria and a few other things, including meetings regarding Safe and Sustainable, the proposed changes to Children's Congenital Cardiac Services in the UK which I really should post about soon.

Anyway, hopefully things will settle down a little soon and I can pay more attention to my blogging, but in the meantime I cannot let such a special event as World Down Syndrome Daye pass without at least making a brief post in recognition of all the wonderful individuals with Down's Syndrome that have touched my life over the past 21 years and of course their wonderful families and carers.  To celebrate the wonderful enrichment they bring to our world, I put together a photo montage that I hope you will enjoy and share.

To coincide with World Down Syndrome Day, I would also like to announce the official launch of Down Syndrome Nigeria Support the new UK charity that I am involved with whose aim is to raise awaress of the situation for children and young people with Down's Syndrome in Nigeria and to raise much needed funds to support the work of the Down Syndrome Foundation Nigeria.