Safe & Sustainable Update
20/05/2010
Over the past couple of months the Little Hearts Matter team has been working with other children’s heart charities to ensure that the voice of the child and parent users of hospital services is heard as the review of surgical services is conducted.
The Children’s Heart Federation have taken that collective voice to the Specialist Commissioning team responsible for the review.
Getting parent priorities into the assessment process
The Assessment Panel led by Sir Ian Kennedy will begin its review of each of the surgical units in May and June. CHF has argued strongly with the Safe and Sustainable organisers that the panel should include a parent with current first-hand experience of the children’s heart surgery service. We want to ensure that the line of questioning at each unit digs beneath generalities to the specifics of what makes for an excellent experience for heart-children and their families. Regrettably, the call for a current parent on the panel has not been met; however, the team has responded by giving an opportunity for a small group of parents to brief the panel before they start the review process
CHF have drawn together a small group of parents whose children have a range of clinical and support needs and who are treated at different units. They will meet with the Assessment Panel on 20th May.
Louise Hall and Isabel Baumber will be representing Little Hearts Matters as they both have a huge experience of working within the charity and have helped to build the support and information services that LHM provides. Their role will be to look at the national service provision for the surgical treatment of single ventricle heart disease. They will not be representing any one unit but the whole LHM membership.
Little Hearts Matter has submitted three main areas of concern to be put forward at the briefing meeting.
1. Parents as part of hospital submissions: some of the surgical units are inviting parents to join in Highly skilled surgical experience.
The treatment of children with single ventricle disorders is complex and requires skilled and experienced surgery and post surgery management. With high learning curves associated with the treatment of conditions like Hypoplastic Left Heart Syndrome, how will the tertiary units ensure that future treatment for children with these life threatening conditions will be offered by the most skilled team in the country and avoid unnecessary mortality?
2. Antenatal Services
The antenatal diagnosis of single ventricle heart disease is the only initial diagnosis that offers parents an opportunity to make a truly informed treatment decision.
How will the Tertiary units ensure high levels of training for district general sonographers, clear referral paths for complex disorders from district general to specialist diagnostic services and then onto treatment teams?
How will the specialist diagnostic teams ensure that they remain up-to-date with current treatment outcomes and lifestyle issues for children enabling them to offer accurate, unbiased information and support to families and how will these teams ensure that the national treatment and termination rates are audited and analysed accurately?
How will the diagnostic team ensure that families can access unbiased support and information mechanisms other than those of the Foetal team before their final treatment decisions are made?
How will the Foetal medical team ensure that they are seen as an integral part of the regional cardiac service working with all congenital cardiac clinicians to ensure clear treatment pathways and consistent information and care plans?
3. Integrated Support
Children with non-correctable cardiac conditions whole life is affected by their heart disorder. The need for highly skilled surgery, although life saving, is only a small part of their world. Every day is filled with challenge, development is affected, mobility, education, the opportunity for an independent life.
How will medical teams ensure that families not only have access to world class surgery but support with medical care both in the Tertiary Centre, Cardiology Unit, local district hospital and the community?
How will the teams communicate added need within the home, throughout education, with mobility and social care? What plans do the team have for the role and expansion of the Cardiac Liaison Sister service?
How will the team ensure that children and their families have access to support or information services that will help them cope with the emotional ride through life with congenital heart disease.
How will the team develop partnerships with organisations that can offer added care such as parent-to-parent support, patient and family condition and lifestyle information, youth support and information and parent-to-parent bereavement support?
The Children’s Heart Federation will also be preparing a DVD with short comments from parents about the current and proposed service that we can feed into the Safe and Sustainable process. We will be filming for the DVD on either the 26th or 27th of May at CHF’s offices in London.
It would be wonderful if parents from the Little Hearts Matter group could be represented on this DVD. If you would like to be a parent representative please contact either LHM or the Children’s Heart Federation.
Parent engagement events
The Safe and Sustainable team are holding a series of Parent events where they will be collecting the views and concerns of parents and older users of the service.
Some of you have already submitted your names to Jeremy Glyde following his presentation at the LHM Open Day in March. If you have not but would like to be considered for a meeting in your area contact either LHM or Jeremy Glyde at the Specialist Commissioning Team. See link below.
The dates for NHS Safe and Sustainable parent engagement events in the areas around each of the surgical units are:
Birmingham Monday 14 June, 18.00-21.00 Maple House
Leicester Wednesday 9 June, 17.00-20.00 Leicester Tigers Stadium
Warrington Wednesday 16 June 18.00 - 21.00 Halliwell Jones Stadium
Leeds Thursday 17 June, 17.30-20.30 Leeds Town Hall
Southampton Monday 21 June, 18.00-21.00 Southampton General Hospital
Plymouth Monday 28 June, 11.00-14.00 Plymouth Holiday Inn
Bristol Tuesday 29 June, 11.00-14.00 Bristol Marriott Royal Hotel
Newcastle Tuesday 1 July, 18.00 - 21.00 St James Park Stadium
London Saturday 3 July, 10.30-14.30 Science Museum
Oxford DATE TBC TIME, VENUE TBC (because of the ongoing investigation at the John Radcliffe Hospital)
Full details of the events, including how to register, are available here.
These events will be an opportunity for parents to communicate directly with the commissioners responsible for children’s heart care services in their region. Through small group discussions and question and answer sessions, parents will have a chance to share their views on which features of the current heart care services work well and which aspects of care need to be improved in the children’s heart care service of the future. The events will include a presentation on the proposed model of care outlined in the Safe and Sustainable Need for Change document.
Members of the Children’s Heart Federation team and Suzie from LHM will be present at the meetings
Please take part and encourage other heart patients and parents to do so,
as this is a time when your views can influence service developments.