Standards of care

From the 1st of April 2016 the NHS in England is providing its cardiac services for children guided by a new set of standards of care.

These standards cover every part of the pathway from diagnosis, through treatment, medical care and support from the hospital to home.

Some of the standards relate to medical expertise and experience. Others concentrate on how families are talked to and included in treatment and care and the surroundings of the child and facilities available whilst undergoing inpatient care.

Some of the standards must be met quickly in 2016 others will be worked towards over the next few years.

These standards are a guide for health care professionals, funders of the service and you as users of the service. You can use them as a guide line for what you should expect from your cardiac services.

If you have any questions about the Standards or the care you are receiving please feel free to give the LHM team a ring to talk them through.

The NHS in Scotland will be producing their own set of standards linked to those in England.

The Welsh NHS have not as yet agreed to use the standards but the cardiac team in Cardiff are hoping they will adopt them.

The service in Ireland has undergone a huge review and plans are now in place for cross border cardiac care.

NICOR – National Institute for Cardiovascular Outcomes Research

Home of the National Congenital Heart Disease Audit.

Every congenital cardiac unit in the UK submits their surgical and interventions outcomes, survival, to the National Audit Database. The audit team check results and then create a record and graphs to show what the outcomes across the country look like.

The public portal of the NICOR website allows you to look at each procedure and each unit. At the moment only results to 30 days after a procedure are reported. Over the next few years this will change to show what a longer term outcome looks like.

If you would like to explore the NICOR congenital site just follow this link. https://nicor4.nicor.org.uk/CHD/an_paeds.nsf/vwContent/home?Opendocument

Parts of the site can be difficult to understand so always feel free to give the LHM team a ring if you would like any further explanation. 0121 455 8982

Be social with us - our latest tweets and posts

    The Youth Zone is our dedicated support network for young adults aged 11 to 17 living with a single ventricle heart condition. During lock-down, we have been working hard to keep our youth members supported and connected with each other.

    We just wanted to shine some light on this awesome bunch, as they have come so far and achieved so much during the Covid Crisis. One of our highlights being this video, a 26 minute exercise challenge via Zoom, all in support of LHM for the 2.6 challenge. They smashed the routine and raised over £500 for us! Thank you.

    The group keeps in touch through regular Netflix parties and lots of healthy discussion on the private message forums, as well as having access to 1-1 support provided by LHM whenever they need it.

    None of this would be possible without our youth leader Lexie and our awesome youth mentors, please can we all thank them for the incredible work they have been doing for these brave young people throughout this crisis.

    Visit the youth zone here lhm.org.uk/youth-zone/
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    6 hours ago  ·  

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    Open Heart Surgery during Lock-down | LHM parent member Rose shares some uplifting words for us.

    "We were very apprehensive about this surgery as the last one he had was a very long recovery. He literally has made so many people proud, Naayt had his open heart surgery on the 11th June and was discharged 11 days later... home! yes, home!"

    "I couldn't believe it either. You will be so amazed at how pink they are after this surgery and its so lovely to see. The only thing that stops them is the drains which he had 1 left in literally 3 days before discharge and his inr being in range which happened on the day he was allowed home."

    "These kids are so amazing and I am so amazed at how fast they can recover and get through these operations."

    Half a Heart, Not Half a Life x
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    22 hours ago  ·  

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