Parliament Workbench

Petition · PE01446 · Session 4

Scottish Standards for the Care of Adult Congenital Heart Patients

Closed Submitted 20 Jul 2012 Health
Signatures
0
852 online signatures with a country
Comments
60
Considered
8 meetings
in the Official Report

What it asks

Calling on the Scottish Parliament to urge the Scottish Government to mandate National Standards for the care of Adult Congenital Heart Patients and to adequately resource the Scottish Adult Congenital Cardiac Service (SACCs).

What the petitioner did first

I have written to Nicola Sturgeon, MSP on numerous occasions over the last few years as have many other ACHD patients. Recently, Michael Moore, Secretary of State for Scotland has also written to Nicola Sturgeon, MSP on my behalf. Any responses have been unsatisfactory and usually indirect.
More recently, I have been working with the NSD (National Service Division) following a complaint I made about my care last year. After meeting with them to discuss my concerns we formed a working group and have met monthly to review progress. However, progress is slow and seems to be hindered by a lack of political interest and drive. I have also highlighted my concerns with the Long Term Conditions Alliance (LTCAS) and I am a member of their Patient Involvement Network to try and raise awareness about ACHD. I also work as a patient volunteer for the Somerville Foundation (formerly known as Grown Up Congenital Heart Association
- GUCH PA). I have raised my concerns with Bravehearts who support fully my submission of this petition.
Prior to the development of the Scottish Parliament and devolution of health I wrote to the Department of Health when I first left paediatric care 16 years ago, many MPs and the then Prime Minister, Tony Blair.

Where it was considered

Official Report
  1. 27 Nov 2012
    Public Petitions Committee
    New Petitions
    1 mention
  2. 5 Feb 2013
    Public Petitions Committee
    Current Petitions
    1 mention
  3. 16 Apr 2013
    Public Petitions Committee
    Current Petitions
    1 mention
  4. 25 Jun 2013
    Public Petitions Committee
    Current Petitions
    1 mention
  5. 1 Apr 2014
    Public Petitions Committee
    Current Petitions
    1 mention
  6. 28 Oct 2014
    Public Petitions Committee
    Current Petitions
    1 mention
  7. 13 Jan 2015
    Public Petitions Committee
    Current Petitions
    1 mention
  8. 23 Feb 2016
    Public Petitions Committee
    Continued Petitions
    1 mention

Signatures by country

852 online signatures
  1. Scotland584 68.5%
  2. United Kingdom103 12.1%
  3. England75 8.8%
  4. United States33 3.9%
  5. Wales9 1.1%
  6. Australia8 0.9%
  7. Switzerland7 0.8%
  8. Northern Ireland5 0.6%
  9. Ireland4 0.5%
  10. Germany3 0.4%
  11. 18 other countries21 2.5%

Comments

60 comments, oldest first
60 comments · showing 1–50
  1. Kathleen Wilkie 11 Aug 2012
    Will need this more and more
  2. Gordon mcgilvray 12 Aug 2012
    let's get it sorted people the folk needing health care here are genuine. how many folk do we all know that fiddle the system. please see sence and sign what ever needs to be signed to start saving lifes
  3. Catherine Mitan 14 Aug 2012
    People with any condition should not have to appeal for help its their right to a better life without worry.
  4. Hazel Greig-Midlane 14 Aug 2012
    standards of care raise awareness amongst clinicians as well as patients and remove obstacles to identifying the correct treatment due to ignorance.
  5. Kathleen George 14 Aug 2012
    patients should not have to appeal for help it is their right to a better life without uncertainty of care causing stress and worry.
  6. Libby Welsh 15 Aug 2012
    Young ACHP adults at the point of transition from paediatrics need to have a clear pathway for care well into their adulthood which is underpinned by excellent standards and practice from specialist cardiologists.
  7. Pamela Mitchell 15 Aug 2012
    Its so sad when we have to appeal like this to save lifes
  8. Margaret McLean 15 Aug 2012
    everyone deserves equal treatment
  9. Silke Thomson 15 Aug 2012
    with the need for this petition it seems once more as if all we have to do is fight for things other people take for granted.
  10. Joy Hooks 16 Aug 2012
    Everyone deserves a chance.
  11. Ailsa McKelvie 16 Aug 2012
    SoC(s) provide a backbone to any health service. This shouldn't require a petition
    - it is clearly necessary to protect ACH patients who need to be treated as unique cases within the NHS.
  12. Iona Donnelly 16 Aug 2012
    My 2 year daughter with a complex CHD will hopefully be one of the GUCHers who will benefit from a supportive, comprehensive and capable network of cardiologists, surgeons and other health care professionals when she reaches adulthood. I hope such standardised care will be in place long before then.
  13. Alan Clark 17 Aug 2012
    Signing this in support of friends
  14. Barbara De Maria 17 Aug 2012
    Signing in support of standards for care for worldwide CHD community.
  15. Margaret Macdonald 17 Aug 2012
    I am a middle-aged CHD patient with a complex history. I appreciate hoe stretched our services are but feel that we are not being supported in the way that people with other medical conditions are.
  16. Ann Standring 17 Aug 2012
    I am with you all, in support of all my friends
  17. Elizabeth Paul 17 Aug 2012
    As the mother of an amazing daughter, I appreciate that the NHS saved my baby's life 34 years ago and am grateful for her life and the care she has received but it has been difficult for her to fight unnecessary battles and suffer needlessly in addition to having to fight to stay alive.
  18. K Walker 17 Aug 2012
    Love to see the Scottish Government support ALL adults with congenital difficulties e.g. Spina Bifida
  19. Jacqui Fordyce 17 Aug 2012
    Standards and guidelines will support people like my sister to receive the care they require by Specialists who understand their needs. Please give your support!
  20. Anthony Sanford 20 Aug 2012
    The text reading check is virtually impossible to use
  21. Maureen O'Brien 21 Aug 2012
    Signing this in support of all sufferers who deserve the best care and attention
  22. Natalie Murphy 22 Aug 2012
    Signing in memory of Catherine Hunter, a beautiful girl inside and out, taken far too soon to shine among the stars. Sleep tight my friend x
  23. Amy Owens 22 Aug 2012
    I am signing this as I have a heart condition called Transposition Of The Great Arteries people need to understand that people who have a heart condition like me shouldn't be treated different to anyone people who have a Heart condition have to fight for their rest of their life people like me need the best care available
  24. Amy Owens 22 Aug 2012
    I am signing this as I have a heart condition called Transposition Of The Great Arteries people need to understand that people who have a heart condition like me shouldn't be treated different to anyone people who have a Heart condition have to fight for their rest of their life people like me need the best care available
  25. Ashley Hall 24 Aug 2012
    For Amber and the rest of the CHD community x
  26. Maureen Yeoman 26 Aug 2012
    Signing in support of all patients with CHD
  27. Kevin McCann 27 Aug 2012
    In support of the development of a national standard of care for all Scottish ACHD patients (including myself).
  28. Derek Henderson 3 Sep 2012
    For my wee hero Lucy lou :)
  29. Lisa Gadon 3 Sep 2012
    signing in support of people with CHD
  30. Jennifer Gray 4 Sep 2012
    For our wee CHD man, Ethan :)
  31. Karl Edward Trotter 14 Sep 2012
    This is the way forward.
  32. Linda Colquhoun 17 Sep 2012
    Not having the appropriate standars in place only causes more anxiety for the patients and their families.
  33. Maggie Ross 17 Sep 2012
    Until today i did not even realisse there was any such support services such as SACCS, Iam a 41year old mother of three and granny of one, i was born with congenital heart defects which have affected me throughout life but now i feel empowered that there are others out there and that we can support each other and our families.
  34. annamarie ash 17 Sep 2012
    We need all the help we can get
  35. Jane Heslop 17 Sep 2012
    I'm the third of 5 known generations within my family born with Marfan Syndrome. Having experienced the best and worst of parts of our Health Service, I would like my grandchildren to be spared the additional stress of dealing with services that are haphazard. We need fully integrated services in Scotland, and the funding to bring that about.
  36. Jennifer Graham 17 Sep 2012
    If the level of service requested by this petition had been available a few years ago, it is likely that my friend would have received the correct treatment when he had his stroke and would have sustained less significant damage.
  37. Stuart Paterson 17 Sep 2012
    Excellent & much-needed cause.
  38. Robert sewell 18 Sep 2012
    We are the lucky ones, make sure you sign up
  39. Billie Cochrane 18 Sep 2012
    This is for my mammy Maggie Ross.
  40. Jamielee Cochrane 18 Sep 2012
    Love you mammy bear x
  41. Lisa Marie Reilly 18 Sep 2012
    Could be anyone, mum, dad, son or you
  42. Susan Archibald 18 Sep 2012
    Improved services and resources are needed urgently to give the people of Scotland a better chance in life.
  43. Susan Archibald 18 Sep 2012
    I am keen to support the development of a national standard of care for all Scottish ACHD patients and hope all my friends join me in signing the above petition
  44. Liza Morton 19 Sep 2012
    Helen Puttick, Health Correspondant at The Glasgow Herald covered this petition in an article on the 17th of September 2012. It is not possible to post the link here but this article can be easily found online on the Glasgow Herald's website. In this article Helen says "THEY were miracle babies whose lives were saved by groundbreaking surgery but now the first generation of Scottish adults with complex heart defects is campaigning for better NHS treatment." She quotes Gill Mitan, chairwoman of the Bravehearts Patients Association, which represents adults with congenital heart defects, as saying: "Our concern is in the worst-case scenario that an adult presenting at accident and emergency will be sent home and suffer a sudden cardiac death because they did not have timely specialist support."

    Thank you to everyone who has signed this petition so far.
  45. Care-Aware 19 Sep 2012
    My whole-hearted support goes out for all those who need more support for their hearts!
  46. Morag MacAlister 19 Sep 2012
    A great deal of time and effort goes into treatment during childhood and this support must be lifelong.
  47. A 19 Sep 2012
    I have pulmonary stenosis and I am grateful for all the skill and knowledge of those who have monitored my condition since birth !
  48. gill boden 20 Sep 2012
    I entirely endorse this petition
  49. victoria green 20 Sep 2012
    I have signed this as my dad had a major heart attack and thanks to the help of the golden jubilee hospital in glasgow my dad is now healthy and enjoying life with his 4 grandchildren.
  50. Caroline MacGregor 21 Sep 2012
    If it were not for the dedication,expertise and commitment of the staff at the SACCU at the Golden Jubilee Hospital I would not be here to sign this petition. All patients with congenital heart defects should have access to the same treatment.