When we talk about the model of care, what we mean is the way we think services should
be organised for people with congenital heart disease.
In our standards we talk about three levels of care
Level one is the specialist surgical centres.
So this is where the really complex surgery and where interventional cardiology takes
place.
The second level, level 2, is about specialist cardiology centres.
These can do all the specialist follow up and outpatient parts of care, but not the
surgery or other interventions.
Level three, is local cardiology centres.
This is the service in local general hospitals.
Our standards apply to all three levels but they make clear if something only applies
at level 1, level 2 or level 3.
The very first chapter of our standards is about the network approach and it is no accident
that we've put this first.
The network approach tells you how all the hospitals looking after people with CHD need
to work together to make sure we get the best results for patients.
A network is a group of services working together for adults and children across all three levels
of service.
When we talked to people about this, many of them who are already working in a network,
they told us what makes a good network.
Everyone in the network needs to know what their job is and work with each other.
There needs to be a really good way of sharing information so that when a patient moves from
one part of the network to another the information travels with them and everyone can access
it and understand it It needs to have all the different parts of
the heart service.
Not just the heart surgery but also the monitoring and lifelong care of patients.
So in the light of what we have heard what we are saying we should do is have networks
right across the country.
With Local networks and broader, bigger networks that cover larger areas of the country.
We want to make sure that if you need surgery whether you're a child or an adult, it is
only undertaken in specialist centres.
We don't think that every hospital in the country or even most hospitals in the country
should be doing this work.
It's highly complex.
The surgeons who perform it need to have special skills and they need to be doing it very regularly.
We also think that within the network the different parts have to have a very clear
understanding of how they work together and how they work with the other services patients
depend on, like intensive care, maternity and so on.
Not every network will look exactly the same: it will depend on which part of the country
you are in.
For example, these would look different if the area you live in is a rural area compared
to an urban area.
But whatever size and shape of the network it is really important that the team of doctors
and nurses get together regularly, we think weekly, to talk about the patients they are
responsible for.
We think the sharing of information is incredibly important and that within each network, everyone
should have access to the same information about their patients.
So hospitals and doctors working together locally, across regions and nationally to
get the best care.
That is what networks are about.
We want better results for patients and their families and consistent improvement right
across the country.
There is a section in our standards all about staffing and skills what that tells you is
what kind of mix of doctors, nurses and other you need to deliver a really good service
and how you make sure you have the right numbers of each.
We've been told it's really important that within CHD centres you have the right number
of people with the right skills.
Because this is quite a rare condition it wouldn't make sense to have somebody doing
this in every hospital in the country.
Instead it makes sense to concentrate people in a smaller number of hospitals.
We've also been told that it's not just about the surgery or cardiology which takes place.
It's also about taking care of how people feel.
They need help to understand what is happening so one of the skills people need to have is
excellent communication skills.
It's not just about being great at surgery.
Being great at listening and explaining is also very important.
Part of our standards cover the number of surgeons and specialist staff who need to
be in place to ensure that the right service can be provided.
Not just 9-5 but 24 hours seven days a week in case any emergency care is required.
Our standards state what needs to be there to ensure 24 hour services throughout the
year and it also explains how we make sure that wherever you are in the country you can
see someone who can give you the care you need for the condition you've got.
This will mean that we will have the right number staff with the right skills in each
of the centres.
That doesn't mean that every single centre will be able to perform every single procedure
on every single patient because sometimes particular specialist skills will be required
which are only available in certain centres.
If that happens, patients would either be referred to another unit, or a specialist
would be asked to come and help.
We think that standards will mean that extra staff are needed at some centres.
One of the chapters of our standards talks about interdependencies: the way the different
bits of the service work together and the way that some of them depend on each other.
We need to be very careful when we are talking about what a service looks like that we don't
accidentally miss something which could have an effect on other services.
We think there are three main types of interdependency.
The first is that congenital heart surgery for children has got a link to other specialist
services for children which are not heart surgery.
This is important because a lot of children, especially babies, have other problems as
well as CHD, so they need care from other specialists too.
The second kind of dependency is the same but for adults so the links between specialist
CHD surgery and the other adult specialties.
The third dependency is between congenital heart surgery for children and congenital
heart surgery for adults.
Very often it is the same surgeons performing the same kind of surgery on the same patients
at different times in their lives.
So we have three types of dependency.
The standards spell out which services we think should be on the same site, which we
call co-location, and which services could be somewhere else as long as it can provide
care patients needs quickly enough.
When we talked to people about this they agreed with us that it was very important that CHD
services worked closely with other services a number of which are not just for CHD.
Good working relationships are very important and the time it takes for a specialist doctor
to see a CHD patient is the most important consideration.
In some instances the doctor needs to be there within 30 minutes.
We had a lot of conversations about the importance of different services being on the same site
and different people had different opinions about this.
Most people agreed that the ideal would be to have everything together on the same site.
Having said that we understand that the way the health service is currently organised
can make this difficult.
For example there are good reasons to set up children's hospitals because sometimes
children require a place which is designed just for them.
So this is a complicated issue.
When we talked to people they said that it wasn't just about where services were, it
was also about the way they worked together in the patient's interest.
So although there is no easy answer to this, taking into account all of the experts we've
talked to, decided that the right approach was to say that the specialist heart care
for children should be on the same site as other children's services.
This is not because there is a simple answer it's because the experts we spoke to throughout
the process said that to get the best possible service that is what you would go for.
This is also consistent with how the NHS provides other specialist children's services.
Our standards also acknowledge that it would be great if we could have children's heart
services and adult congenital heart services in the same place but we know that not all
of these services can be brought together so what is really important is that we ensure
a good close working relationship between these two parts of the service.
We believe that these standards will help to ensure that that wherever patients receive
their care, all the experts they are likely to need are on site or available very quickly.
As not all centres currently meet these requirements they will need to consider how they can arrange
their services in order to comply with these standards.
We have a chapter in the standards about fetal diagnosis.
That is spotting a problem before the baby is born so that when the baby is born everything
possible is in place to make sure that both mum and baby get the best care available.
The numbers at the moment tell us that only about 1 in 3 of the babies who could be picked
up before birth are spotted before they are born.
That is not a very good success rate and we think we can do better.
There are already some national requirements about how to detect heart problems in babies
before they are born but those standards have not yet been followed.
So it is really important that whatever standards we introduce we make sure that the training
and understanding is in place and that there are ways of measuring how the quality is improving
all the time.
It seems from our conversations that one of the main issues is getting enough training
for the people who perform the ultrasound scan.
Doing the training just once isn't enough.
People need regular top-ups.
Another key issue is about making the whole process quicker so that when mum has an ultrasound
scan that shows there might be a problem, then very quickly a further test can be arranged
because it's very upsetting and very concerning if there's a long delay between that first
test and any follow up test.
So we want our congenital heart disease networks to make sure that the standards are followed,
that people get the right training and that the service is organised in such a way that
if someone does need a more specialist check that can happen really quickly.