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Making life better foradults with congenitalheart diseaseAn Easy Read LeafletMay 2012
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What congenital heart disease is 2What this leaflet is about 2What the NHS is doing 3More about adult congenital heart disease 4Looking at services 4
• Looking after your body and heart 5• Growing up with heart disease 6• Feeling good about yourself and being happy 6• Getting older 7• Moving from children to adult services 7• Having enough services for people 8• Training staff 9
How services work 9Changes we want to make 10
• Getting care closer to home 11• Linking services together 12• Adults with Down’s Syndrome 13
Doing things in a good way 13What happens next 14Telling us what you think 15
Contents
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What congenital heart disease is
Congenital heart disease is when youare born with something wrong withyour heart.
There are lots of adults living with thisdisease in England.
Having congenital heart disease canchange a lot of things in your life.People who have it need lots of advice,support and care.
What this leaflet is about
We are the NHS. We are in charge ofproviding health services in the UK.
We have written this leaflet to find outyour views on changes to services foradults with congenital heart disease.
We want to make sure good supportand care happens for everyone – nomatter who they are or where they live.
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What the NHS is doing
We spoke to patients, their families and people who work in the NHS.
We found that there can be bigdifferences in the support and careadults with congenital heart diseaseare getting.
Some patients said they
• get very good care but think thingscould still be better
• wanted to get more advice abouthow to live with congenital heartdisease
We want to change this. We want alladults who live with this condition to
• be safe in things they do• live a long and healthy life• get the best care and treatment
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More about adult congenital heart disease
People are born with congenital heartdisease. Adult congenital heart diseaseaffects adults over 16 and is a rarecondition. This means that not manypeople have it.
Some people do not know they have it until they are adults.
Treatment and medicine is now a lotbetter. This means more people withcongenital heart disease can live alonger life.
Looking at services
We want to look at services that helpadults who need care and supportthrough their lives. We want to look atwhat is happening for people now andwhat could happen in the future.
So far, we have looked at things to do with
• learning, working and going outwith friends
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• relationships, family and havingchildren
• other things to do with keeping welland having a healthy life
The NHS needs to give as much supportand advice on these things as possible.It is possible for adults with congenitalheart disease to do everything thatother people do. The more they knowabout the condition, the better they can deal with things.
Looking after your body and heart
Looking after your body and heart isimportant for everyone. Keeping fit andeating well is very important for adultswith congenital heart disease too. Youcan get advice on the right kind ofexercise that is good for your heart.
It is important to keep your teeth cleanand looked after too. Not doing thiscould damage your heart.
Growing up with heart disease
It can be hard for people growing upwith congenital heart disease. Movingfrom being a teenager to an adult canbe one of the hardest times for people.It can make them feel lonely and notpart of things.
Services need to be right for the age of the person who is using them. Forexample, teenagers need to use servicesand get support that is right for them.This might not be the same service asfor an adult.
Feeling good about yourself andbeing happy
Having a condition like this can makeyou feel different. Lots of people toldus that they worried a lot about theirhealth and found things hard.
Getting support with mental healthand how you feel can be very helpfultoo. For example, having counsellingcan help a lot. Counselling is when you sit and talk to someone about how you feel.
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Getting older
Getting older can mean that peoplestart to have new things wrong withthem. Some people with congenitalheart disease can get other conditionsas they get older too.
We want to make sure that olderpeople get the right care and support.We want them to get the services thatwould help them as things change.
Moving from children to adultservices
It can be hard for people to move fromchildren’s services to adult services.Some people do not get the care andsupport they need.
Transition clinics have been set up insome parts of the country to deal withthis. Transition clinics are services thatgive special help and support to peoplemoving between services.
But this is not happening everywhere.We need to make sure that the rightservices and support are there foreveryone who needs them.
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Having enough services for people
More people are starting to needspecialist care to help them with adultcongenital heart disease. We want tomake sure this happens in a good wayand the right services are there forpeople.
We want
• doctors to have enough time to bewith their patients
• women with congenital heart disease who have babies to get thecare they need
• adults with congenital heart diseaseand other conditions to get the carethey need
People who work in specialist careneed to work together. This would help everyone get the right care andservices.
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Training staff
The NHS needs to train staff so theyknow how to take care of adults withcongenital heart disease. This wouldmean getting the right training. It canbe better if adults with congenitalheart disease are treated as part of a specialist service.
It is our job to make these things happen.
How services work
A group of experts have thought ofbetter ways that services can work.They hope their ideas for serviceswould help more adults get the best possible care and support.
We want to know what you thinkabout these ideas.
The services would work in differentways to deliver care. This would happenat specialist centres and in local centrestoo. Specialist centres are places wherepeople can get special treatment.
We want adults to get the best carepossible and get as much support asthey can.
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Changes we want to make
• local centres would be in charge ofeveryday care. This is where peoplewould still go for regular checks ontheir health
• intermediate centres would be incharge of things to do with the heartthat do not need surgery
• specialist centres would be in chargeof things to do with surgery. Wewant to have a smaller number ofspecialist centres with bigger teamsof heart surgeons. We think this willhelp people get the best care bysurgeons who have lots of practicewith congenital heart disease
• we want to make it easier forchildren and teenagers to move intogetting the care they need as adults.We think the best way for this tohappen is to have specialist nurses tohelp people move between services
We want your views. You can readmore about the services by going to
www.specialisedservices.nhs.uk/info/adults-with-congenital-heart-disease
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Getting care closer to home
We want patients to get the best carethey can close to where they live. This would stop patients having to travelto a specialist centre all of the time.
Patients should have a care plan tomake sure they get the right care. Their doctors should know as much as possible about them so they can get this.
If there is an emergency, then aspecialist heart doctor who knows a lot about congenital heart diseaseshould be able to help.
We want families to be able to staynear to specialist centres if they needto. Adults with congenital heart disease and a learning disability mightneed to have their carers and familyclose to them. These people wouldneed somewhere to stay too.
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Linking services together
We want to link up doctors, nurses andspecialist centres and get them workingtogether. This would help adults withcongenital heart disease get the bestcare and support.
More adults are living with congenitalheart disease. This means that somenurses and doctors would have to workvery hard to care for patients.
We want patients to have a nurse thatthey know well to take care of them.This helps the patient get the right careand advice.
We want better support andinformation for partners, families andcarers. This would help people knowwhere to go to get the right advice.
Specialist centres should have the bestinformation for patients so thateveryone knows about support theycan get.
Heart charities can help to do this too.
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Adults with Down’s Syndrome
Down’s Syndrome is a condition youare born with. Almost half of peoplewho have Down’s Syndrome are bornwith heart problems.
It is very important that these peopleknow as much as they can about adultcongenital heart disease. They shouldget the right emotional support too –this means getting support to do withhow they feel.
Doing things in a good way
The NHS asked a special group to worktogether to write down the best way to give care and advice on everythingabout adults with congenital heartdisease.
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As part of their work, they wrote a list about the best kind of care andsupport people with congenital heartproblems need.
You can read more about this list bygoing to
http://www.specialisedservices.nhs.uk/info/adults-with-congenital-heart-disease
What happens next
The NHS will ask another group thatknow a lot about congenital heartdisease to work with them.
The group would visit differenthospitals to find out if they arefollowing the right standards in thingsto do with congenital heart disease.
We want you to tell us what you thinkabout the standards. The things you tell us would help the plan develop.
Over the next few months, we areworking on a plan to make thingsbetter for adults with congenital heart disease.
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You can tell us what you think by
Writing to us at:
Christy RowleyNHS Specialised Commissioning Team2nd floor Southside 105 Victoria StreetLondon SW1E 6QT
E-mailing us at
You can read about the list we areputting together to make sure peopleget the right care, on this websitewww.specialisedservices.nhs.uk/info/adults-with-congenital-heart-disease
For more information, you can
Telephone 0207 025 7520
Or email
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Thank you to:
Raincharm for the words.www.raincharm.co.uk
Photosymbols for the pictures.www.photosymbols.com
Epigram for designing the leaflet.www.epigram.co.uk
These groups who helped check thewords and pictures:
• Mencap• Community Futures Kent part of
the Avenues Trust Group• Down’s Heart Group
Organisations involved in the review
www.specialisedservices.nhs.uk
