Appendix 12NHS England congenital heart disease review consultation report: references to the Infant Heart Study

Page 59: suggestions on the proposed standards for nursing

One organisation makes a list of specific suggestions based on the findings of a recent two-year multicentre multidisciplinary research study. The study found that specialist nurses provide essential support and are often the link between local and specialist centres. This link was best demonstrated in cases where specialist nurses attended local clinics or trained key link nurses in local teams. The study makes a list of recommendations, some of which are already included in the draft standards:

at discharge from the specialist centre, all infants should have a named specialist nurse (e.g. cardiac liaison role or equivalent). Where it is not possible to allocate a named specialist nurse, there should be a named specialist nursing team;

all families should receive ‘check-in’ telephone calls from their named specialist nurse (team), the frequency of which should be determined by their needs;

a specialist nurse should attend all outpatient clinics and outreach clinics;

all families should have access to a telephone support service led by specialist nurses;

having cardiac trained nurses in the community (or formal training once a year for community paediatric nurses); and

training key link nurses in local hospitals to establish direct links and familiarity with specialist centre protocols.

The same organisation makes recommendations on how to improve the community nursing service, which the study found to be inconsistent:

all patients with a medical need should have access to community nursing which should be supported by the specialist centre; and

home monitoring should be provided for all patients with a primary diagnosis of HLHS5, functionally univentricular heart or pulmonary atresia; community nurses may need to run Skype clinics (or just clinics) rather than provide home visits.

Page 60: suggestions on the proposed standards for psychologists

The organisation drawing on the study mentioned above makes a number of recommendations for psychological support. The study found that psychological support was insufficient and focused mainly on patients’ medical rather than psychological needs. The recommendations are:

• psychosocial meetings should be held after ward rounds in the specialist centre (led by the lead specialist nurse and psychologist) in order to determine needs and liaise with local or referral services as appropriate;
• for families identified to have psychosocial needs, a multidisciplinary team including psychosocial involvement should be established as early as possible (2–3 days prior to discharge or earlier) with all team members invited to a discharge planning meeting (either in person or via teleconference/Skype);
• families with psychosocial needs should receive more frequent phone calls (‘checking in’) from their named specialist nurse (team) and additional visits from a health visitor who is able to provide support and refer on to a psychologist if necessary; and
• for families with psychosocial concerns, learning difficulties or difficulty communicating in English, the Study recommended referral to a health visitor/social work team to assist in ongoing training support (in their own home).

Page 61: suggestions on the proposed standards for cardiologists and paediatricians

The study mentioned above identified knowledge gaps between specialists and non-specialists as well as poor communication between health professionals, which could result in specialist centres not knowing what local and community services are available. The findings also showed that the level of local support across the country varied and that the number of available Paediatricians with Expertise in Cardiology was often insufficient. The positive counterexamples were cases where a Paediatrician with Expertise in Cardiology had links with the specialist centres and often ran joint outreach clinics with cardiologists. Drawing on this study, the organisation makes the following recommendations:

all patients should have a named paediatrician (with expertise in cardiology where possible);

for all patients, responsibility for care co-ordination should be transferred to the named paediatrician at discharge from the specialist centre. The named paediatrician and GP are responsible for referring to local services and maintaining effective communication between health professionals and should act as a consistent point of contact in their locality; and all patients should be seen by their named paediatrician and named cardiologist at joint outreach clinics.

Page 116: information sharing

Another refers to a research suggesting that referral processes and sharing of patient information between different professionals involved in CHD care are inconsistent and often poorly coordinated.

Page 118: organisation, governance and audit

One respondent makes a specific suggestion relating to audit. They suggest a number of data fields should be added to routine cardiac audit including birth gestation and birth weight.

Page 119: home monitoring

One research team makes specific reference to their study which recommends that further research is conducted on the effectiveness of the constituent components of home monitoring.

Page 122: information for patients

Respondents believe patients/parents/carers should be given clear guidance about what to expect with a diagnosis of CHD. Information provided should include comprehensive material about the signs and symptoms that are considered ‘normal’ and how to cope in unfamiliar situations, with the inclusion of important contact numbers and helpful advice.