Congenital Heart Disease – Facilities, Communication, Transition, Pregnancy, Palliative care

Congenital Heart Disease – Facilities, Communication, Transition, Pregnancy, Palliative care


The section in our standards which deals with
facilities describes what kind of buildings and equipment are needed to make sure that
people with CHD get the right care. When we talked to people about this we heard
lots of different things about how hospitals could do more to support patients and their
families when they have travelled from far away. Simple things like information about
where the hospital is or where to park. Patients told us it was very important that hospitals
are clean and well organised and that as far as possible the service is ready for the kind
of patients which they receive. Which means different facilities for children and adults,
and as far as possible, different things for teenagers who fell like they don’t fit in
anywhere. Many many patients told us that Wi-Fi was
very important for staying in touch with friends and family, for school and for work. We were also told it was important to get
some exercise whilst they were in hospital, to be able to eat healthy food and for wheelchairs
to get around easily. So in our standards we have described ways
of tackling those things and making sure we get the right facilities including the things
we have mentioned such as Wi-Fi, parking and so on. Again we think networks will be key to this,
making sure they work together to get the best facilities and make sure patients can
have as normal a life as possible, because it’s really tough for families living in a
hospital a long way from home and from the support of friends and family. One of the most common things we’ve heard
when we talked to patients about their experience of care was the importance of good communication.
Being spoken to in language they could understand. Being given the right information at the right
times. Being told honestly whether the local centre was the best place to receive their
care. So we have heard lots of things from patients
about the importance of good communication. The importance of simple and straightforward
explanations and support when there are problems. It’s important that patients and parents don’t
need to give their case history and say what’s happened over and over again to different
doctors and nurses. It’s important that the information can be used once and passed through
the system. Numerous parents said that they were so nervous that they felt they had to
stay with their children all the time in hospital because nobody else understood their children
as well as they did. So our proposals deal with that and emphasise
the importance of having really good information and that it is passed on effectively. We want
every patient to have an individual care plan which sets out what’s going to happen to them
and they should be involved in drawing up that plan to taking into account their particular
needs. We believe these standards will help ensure
that patients, families and carers will have a better understanding of CHD and be provided
with more of the information which matters to them. And that they will be helped to be
involved in every decision about their care in the way they want to be. When we had discussions with children about
their care and with young adults one of the things they told us they were most concerned
about was transition. Transition means change and it is the change from going to the children’s
services to adult service. For many people it is a bit scary because
it feels like a cliff edge. You get very used to the children’s service, spending many years
being looked after by the same doctors and nurses in very familiar surroundings then
suddenly you go from the children’s service to the adult service and it’s very different.
Children told us they weren’t looking forward to it, adults told us they hadn’t enjoyed
it and those going through it said it wasn’t much fun. So having heard all those concerns what we
were also told was there are things we can do to make it better:
Having dedicated transition nurses who stay with the patient during the move from children
to adult services Having young adult clinics so that teenagers
aren’t required to attend clinics with screaming babies or older people.
Having special days to learn about the new service
Being able to talk to a buddy who’s been through the same process
And sometimes visiting the adult service and meeting the staff before you have to go there
for the first time So all of these things provided the basis
for the transition process we describe in our standards. We believe these standards will help to ensure
that the CHD service in future makes it easier and less scary for people to make the move
from children to adult services. As there are more and more adult patients
living with CHD because the population is growing and because more and more patients
with CHD are surviving to live full lives as adults the issue of pregnancy and contraception
comes up. We have heard that it is important that there
is a close link between maternity and adult CHD services to help adults receive the best
support and advice on pregnancy including the risks and actions they can take to improve
their chance of a successful pregnancy In this section of the standards we have suggested
that women who could have children get the opportunity to discuss the issues with a specialist
cardiologist and a specialist nurse. For men with CHD there is a chance they could pass
this on to any children they have so they need to have a conversation with a counsellor
about the possibility of that happening and what that might mean for them.
Our standards cover the staff who need to be available to provide this service and that
consideration for people who are considering pregnancy or are in the right age range for
pregnancy is included in their care plan. These standards will help ensure that patients
are better equipped to make informed decisions regarding pregnancy and contraception and
receive the right level of support throughout this period. Very early on in the process we heard some
really concerning stories about what happened to people when they suffered a bereavement
and someone close to them died from CHD. So we’ve included a chapter in our standards
on palliative care and bereavement. We heard that during these times support is
needed by the patients and their families and carers and that it is important that staff
are able to communicate in an open and sensitive way. In these standards we explain how CHD services
should help patients and families cope with this really difficult time, what good support
looks like and if somebody dies what follow up and support will be needed.
Amongst other things this would mean a named doctor and nurse providing close care for
families and patients and trying as much as possible to make the arrangements fit with
what the patient wants and need at end of life. So our standards set out how care should be
organised at this difficult time. We believe that through networks working together we
will be able to provide appropriate care for the patients and for their families and carers.