Report on visit to CLAPA UK Annual Meeting in London on Saturday 30th October 1999.
Attending: Eddie Byrne
11.05 a.m.
Meeting opened by Gareth Davies, Chief Executive, CLALA UK.
11.10 p.m.
Configuration of the new cleft services – an overview.
Speaker: Dr. Sheila Adams, Medical Director of Health Services at NHS and Deputy Chief Medical Officer. Responsible for development and implementation of specialist medical care.
Spoke of how they shared a common aim – the improvement of services and the improvement of the life of the child born with a cleft.
The move now was away from research and towards implementation of the recommendations of the CSAG report. What the NHS was now trying to do was a complex and ambitious agenda. No one locality sees enough births to provide the level of service expected. Care was through childhood to adulthood. The NHS had a poor record in this regard. Adolescent medicine hasn’t received the attention it should. A group was to put recommendations to the Dept. of Health within the next year on adolescent medicine, including psychological and counseling services.
The CSAG Report reported how lots of surgeons were carrying out primary surgery on c.2 children per year. There should be a move towards 6 to 8 centers of care with 2 surgeons per unit, dealing with 80 to 100 new cases per year.
The Cleft Implementation Group was to ensure 1) adequate records, including video, be kept, 2) fair access (hub and spoke model, the hub providing the specialist care, with the spoke providing care that could be provided locally.
There will in some instances be twin sites which will be dictated by geography, and the can work with proper communications and protocols. This will see a reduction in the number of centers from the current 57 to less than 15 (including twin sites). It must ensure 40 new cases per surgeon. Proper clinical audit must be provided for, recording the experiences of the children as they go through the care system.
The UK services do not compare favourably with the world’s best, or with those of other fields (e.g., cancer).
There was a certain frustration that things were not moving quicker. The north of the UK looked more straight forward than the south in terms of the changes envisaged. Some regions were finding it a difficult task deciding which center was to be the hub.
They did not want to compromise the services to existing children. With regards to the filling of medical posts, the arguments to be made were – advertise the new posts (the usual process)? Or give existing people first opportunity to apply? A geographic preference to people based in a particular area?
In conclusion, the Dept. of Health recognizes the criticisms of the CSAG report and is taking them on board. Some areas are complicated. They are continuing to work with regional offices and have to go through the full consultation process. The area of cleft treatment and care is part of the Government’s wider agenda to modernize the health services.
Points made and questions raised (from the floor):
- The public consultation process – how and when will it happen?
- The London scenario – 2 centers?
- Fear expressed of a 2-tier system.
- The CSAG report was an update on one from the Royal College of Surgeons (in terms of number of cases per surgeon, from 30 to 40+).
- Travel expenses must be assured.
- Will patients have a choice of where they can go? Answer – in principle, yes, they should have choice, however, bureaucracy will be there to be overcome.
- Parity of excellence necessary. Reply – Comparative audit necessary to adjudge which centers are not doing well so as to redress.
- (N.Irl rep.) – One center, one surgeon in Northern Ireland, and very happy with that set up. All the team new the children.
Concluding remark – Must ensure that the spoke elements provide excellent further developmental care (aside from the clinical excellence of the centers).
12.30 p.m.
Plans for national recording of data.
Speaker: Mark Hammond – coordinator of CARE (Craniofacial Anomalies Register).
Why collect data? – research, audit, purchasing and planning, workload (numbers and training).
Development. Cleft Palate Index set up in 1982, CARE in 1990. CSAG is an opportunity to develop CARE – to promote output, simplify database, stop collecting grey data, funding.
Current 3-year project is a Dept. of Health project. One of the aims is secure and confidential data. Now one year into project. Will go live in January 2000.
Register is called NHSNet. It is an Internet like site, but you cannot go into it from the Internet. It is designed for clinical information. Security is a worry. A securid card will allow access from any remote computer.
The advantages of NHSNet;
- Teams put in their own data.
- Teams are responsible for updating their information.
- NHSNet is inexpensive – running all the time.
- Data always up to date.
- Less missing data/typing errors.
- Data can be validated online.
- Multiple access to data.
- Standard reports.
- Online help.
- Secure, and database backed up.
Validation;
- Office for National Statistics.
- Other databases.
- Capture/recapture techniques – compare databases.
Costs;
- Who will pay.
- Pay for what – hardware, software.
Data Set;
- Previous CARE forms.
- CSAG team reports.
- Steering groups.
CARE web site;
- Users – different levels of access.
- Category 1 – General public/NHS employees.
- Access to Cleft teams and registrations, % Cl. Cp. Clp., Incidence rates.
- Category 2 – Cleft teams.
- Access to surgical protocols, lists by name, DOB, cleft type, etc., % of missing data by specialty/year, reports on audit/outcome by year, % rated for secondary operations by year, download teams data in MS Access format.
- Category 3 – Systems administrator.
- Assign user names, list duplicates, output for Office for National Statistics, download data.
Future developments:
- Ensure it is fully used.
- Purchaser demands.
- Good outcome data/better treatment.
- Sponsor research.
- Link with electronic patient health record.
2.05 p.m.
CLAPA projects (funded from £100k bequeathed for particular uses)
CLAPA/Glasgow University Research Project.
Speaker: Dr. Ashraf Ayoub
- Project is about measuring clefts using 3-D imagery.
- Is a 3-year project starting 1 Nov 1999.
- Current laser scanning is a 17-second procedure.
- This stereo photometry process utilizes 2 cameras and computer software.
- Benefits; Fast capture (½ second) of facial configurations. Simplicity of input operation. Precision of measurement. Immediate 3-D display – 5 minutes. Non-invasive technique. Cost effective.
2.50 p.m.
CLAPA Uganda Project
Speakers: Andrew and Sarah Hodges.
- CLAPA funding £10K.
- 377 cleft repairs.
- Cost per repair – £27.
- Maximum of 14 in one day, and 64 in 4 days.
- (Accompanying slide show).
3.10 p.m.
CLAPA Sri Lanka Project
Speaker: Dr. Michael Mars (CLAPA trustee)
- Have been in Sri Lanka since 1984.
- More than just surgery – treatment , research and training.
- No speech therapist in Sri Lanka. A benefactor gave £200k.
- They set up a speech therapy school in the summer of 1998.
4.p.m.
Regional Reports
Speaker: Jaquie Napier
There are 13 regional reps. Aim – to encourage communication between the groups. Recently have secured representation at trustee level, and more recently had a further 2 elected from the Regional Committee to Trustees, giving current representation of 3.
Need to pool money. Need for better accounting system.
One of the tasks given to the regions was the distribution of the maternity folder. This proved not so simple to achieve (criticism of regional contribution towards the work of the central administration).
It has been an eye opener to see how the different groups are working. Emphasis on CLAPA being one group – all working towards a common goal.
Need for a National Advisory Committee.
Have seen a number of changes in regional reps in the recent past. Need to improve communication with other groups. Need to encourage a greater feeling of belonging to the one organization.
4.20 p.m.
CLAPA – how to survive into the next millennium?
Speaker: Gareth Davies
The organization needs to expand. There needs to be greater clarity of purpose. Need to empathize with what people are going through. Support through the group network. 2/3 of market for products is the NHS Trust, 1/3 being parents. Providing information.
Funding and resources – never guaranteed. More difficult now than four years ago. It is hard to get funding for ongoing work. CLAPA has built up a large database of previous funders. 15-20% of funding comes from appeals – it is beginning to replace statutory funding.
The regional representative body has worked well in general. Need to put emphasis on CLAPA being one organization. Full-paid membership the most practical way forward (in his view). It will be some time before it is implemented in full. Is this the way forward? (question to the floor). Is there a halfway house solution?
Responses from the floor;
- No parent should pay for information about their child’s condition.
- G.D. – Paid membership would entitle you to a vote, everyone would have a right to information.
- Have to go forward to a system of elected members, regional reps.
- Membership system would revitalize CLAPA.
- Ability to pay subscription?
- Are there any other national organizations as an example?
- Should have elected trustees.
- Should have regional reps as trustees.
- Voting vs. membership fee?
- Of the regional groups, some contribute, some have never done so.
- The question of rights vs. obligations.
- 10% contribution from branches.
- Every parent should have an opportunity to vote.
- Question posed – voting for what?
- Suggestions – crucial issues, regional representatives, trustees.
- Medical professionals – a right to be members? Voting rights?
- Comment – this was not a criticism of the trustees – they were to be commended.
- There are not many clambering to be trustees?
Meeting closed 5.15 p.m.
Report prepared by:
Eddie Byrne CLAPA Ireland
