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PE01446: Scottish Standards for the Care of Adult Congenital Heart Patients

Health

Petitioner: Dr Liza Morton on behalf of Scottish Adult Congenital Heart Patients

Status:
Lodged

Date Lodged: 20 October 2012

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).

 

 

Petition History:

The petitioner has also collected 464 offline signatures.

Summary:

27 November 2012: The Committee took evidence from Dr Liza Morton, and Vicki Hendry, The Somerville Foundation. The Committee agreed to write to the Scottish Government, the Scottish Adult Congenital Cardiac Service, the Somerville Foundation, the Scottish Association for Children with Heart Disorders, Bravehearts, the Children's Heart Federation, the British Heart Foundation, Health and Social Care Alliance Scotland and NHS Specialised Services (England). Link to Official Report 27 November 2012 (438KB pdf)

5 February 2013: The Committee agreed to write to the Scottish Government. The Committee also considered a request for submissions to be treated as confidential. The Committee agreed not to accept the submissions on this basis. Link to Official Report 5 February 2013 (374KB pdf)

16 April 2013: The Committee agreed to write to the Scottish Government. Link to Official Report 16 April 2013 (472KB pdf)

25 June 2013: The Committee agreed to defer consideration of the petition until 2014 for an update from the Scottish Congenital Cardiac Network on developing national standards for the care of adult congenital heart patients in Scotland. Link to Official Report 25 June 2013 (499KB pdf)

1 April 2014: The Committee agreed to defer consideration of the petition until the end of 2014 and to maintain a watching brief on progress towards the development and implementation of national standards for the care of adult congenital heart patients in Scotland. Link to Official Report 1 April 2014 (448KB pdf)

Written Submissions:

Despite the DoH developing standards for the care of Adult Congenital Heart Patients in 2006, and many ACHD patients reaching adulthood a generation ago, Scottish patients still do not have national standards for their care.  

Without Standards there are no guidelines for the care of ACHD patients. This presents risks particularly regarding the care of ACHD patients by non-specialist cardiologists.

Further, this means there are no standards to guide the care of ACHD patients for GPs, when they present to A&E or other to health professionals. 

This also means that consistency and equity of care cannot be standardised. 

Without standards how can gaps in services and between the current level of care and that required be measured and monitored? 

How can patients ensure that they are recieving the care to which they are entitled without standards? How can they inform themselves, and local care providers, about their care? 

Without standards many patients are left feeling uncertain about their care and unsafe. 

A growing number of CHD patients are leaving paediatric care each year and will also need to be supported as adults. 

A lack of adequate resources and standards leave clinicians "fire fighting" rather than being able to provide adequate or preventative care.  This is not an efficient use of NHS resources. The NHS is left to pay for its "mistakes".  Further, this economic burden is even greater if loss of earnings and sick pay are taken into account. 

Is it ethical to provide world class care to save a baby's life, with palliative rather than preventative treatment, if this care is not extended to the rest of that person's life?

This petition is signed for my dad who had a heart attack I support care of coronary heart disease patients , I am so glad I seen this on twitter.

C Smith

16:15 on 12 Oct 2012

Good luck - this is so important!

Claudia Franke

9:02 on 12 Oct 2012

I have thought long and hard about my support on this petition for standards in the care of adults with congenital heart disease.Undoubtedly these standards have to be decided by the correct governance, and I support this on that basis.

Mrs Stevenson

23:24 on 11 Oct 2012

The Children's heart foundation share our petition on facebook stating that: "This is a petition from Dr Liza Morton calling for National Standards for the care of Adult Congenital Heart Patients in Scotland. CHF believe that all congenital care in the UK should meet agreed minimum standards."

Liza Morton

10:41 on 11 Oct 2012

My daughter was born with esopahageal atresia, she spent her young life in Yorkhill Childrens Hospital where she was also diagnosed with congenital heart disease and as an adult has had to encounter very difficult surgeries, but she has had the support of a truly amazing team. We support the petition for standards in the care of adult congenital heart patients and I am sure the consultants and doctors will make sure that the right standards will be implemented, and that the patients who have been writing to the government will see a benefit in their own care and the care of others.

M & G Hepburn

14:53 on 07 Oct 2012

We sign this petition for our sister, who like many others had another congenital defect as a child and spent the first year of her life in Yorkhill Childrens hospital where she underwent major surgeries. Many of these children and children like her are born with congenital heart defects. This has resulted in further surgeries and complications during pregnancy. Recently over a 9 month period she has underwent 2 major open heart surgeries, further surgeries and a pacemaker implantation. The care she has recieved in the SACCS team has been inspirational to her and to us as a family. However she has encountered difficult obstacles in her local care. She has however remained positive and focused that education is the way forward, and she throughout her illness has arranged and delivered education to others by letters, emails, audios and meetings to create awareness and an understanding of congenital heart defects. Writing to the government even when she was very ill. We as a family hope that standards are delivered .The correct standards that the SACCS team will be able to meet and deliver a patient experience both within and outwith the arms of the team that she admires and who throughout her difficult time has left her with the biggest smile and with a legacy of hope. A smile and that make us proud to call her our sister.

McFadyen,Murray,Rorrison, Hemphill & Hepburn Family

14:39 on 07 Oct 2012

My daughter was born in 1971 with a congenital heart defect and is now 41 years old, give our children a chance, a future and allow them to grow old like us.

Linda Hanratty

22:47 on 01 Oct 2012

Health Services in Scotland should not be dependant on what is happening in England & Wales as Health is a devolved issue. We as a patient group have supported the SACC service since its inception and continue to do so. Adults with CHD deserve and require excellent and timely care at the point of need. We fully support the campaign for CHD Care Standards in Scotland and urge the Scottish Government to implement the standards as a priority in this term of Government.

Bravehearts

22:56 on 24 Sep 2012

Last year I benefited from major heart surgery at The Golden Jubilee Hospital to resolve a major congenitical heart defect. I cannot say enough in praise of the expert care I received at this hospital and for their support. Since then I have met many patients some of whom have suffered from heart defects from birth and have to live with the consequences of their condition for the rest of their lives. It seems inconceiveable to me that the Scottish Government is unable to provide a level of service to congenital heart suffers which is at least as good as elsewhere in the UK. I was astonished to find that this is not the case. I read in The Herald on 17 Sept 2012 that the Scottish Government is waiting for the England & Wales guidelines to be reviewed before taking any action. On the basis that future guidelines in England & Wales are likely to be no worse than at present, surely the least NHS Scotland can do is to move towards the scale of provision currently being provided elsewhere. Why should health provision on this important issue in Scotland be tied to a review taken elsewhere especially as there is no Scottish control of the process? What if that review in England doesn't take place for some time? What will happen in the meantime? I fully support this petition.

Archie Roy

11:00 on 24 Sep 2012

A significant number of people have reported that they couldn't get past the capcha code when trying to sign this. We have lost many other signatures because their were false instructions to a texting facility that hadn't been set up. I hope this is noted when numbers are compiled. Thank you to everyone who has persisted & managed to sign.

Liza Morton

10:22 on 24 Sep 2012

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