Interviews - Sue Lewis-Jones


UK

ABOUT YOUR OWN STRUCTURE :


  1. Puce First of all, do you have an individual and/or collective approach ?

I am the only consultant regularly seeing children in the dept., but I have a special interest in eczema.


   If individual ;


  1. Puce How many children have today integrated the patient education programme in your department ?

We do not have a specific patient education programme at present.


  1. Puce Can you describe how an initial interview takes place?

It takes place in outpatients as part of the medical interview. We (doctors : myself or registrar), spend 20- 30 mins (longer if necessary) taking a detailed medical, paediatric and atopic history,y looking at treatments, trigger factors, quality of life (QoL) etc, then they usually see the specialist nurse for around 30 mins or longer.


  1. Puce Who conducts the interview (doctors, nurses, psychologists..) ?

Doctors –sometimes a specialist nurse first sees the patient.


  1. Puce What type of objectives are set during the initial interview ?

A treatment care plan is established, we try to empower both parents and children to apply the treatment and we demonstrate techniques for using the creams, bandages etc.


  1. Puce Do you use educational support tools and, if yes, what type of tools are used with the patient ?

We use booklets on atopic eczema, topical corticosteroids, emollients and calcineurin inhibitors if necessary. Wet wrap bandages: we use videos and booklets as well as clinical demonstrations.


  1. Puce How do you use these tools ?

The nurse goes through the information with them.


  1. Puce Is there a follow-up ? If so, how is the follow-up organised, and who conducts it ?

Yes, it usually depends on the severity of the disease. It could be the following week if it’s very severe or infected, and usually within 4-8 weeks at a parallel nurse-led clinic, or sometimes at a Doctor’s clinic. We also have a telephone help-line and the nurse will do home visits where appropriate.


  1. Puce How is the patient’s progress evaluated ?

We use a proform sheet for the nurse led clinics including Quality of life questionnaires (CDLQI, DFI and IDQoL depending on age). Severity is assessed as an overall: none, mild, moderate or severe, infected. We also ask about sleep disturbance.


  1. Puce How many members of staff participate in this programme and what training, if any, do they receive ?

Nurses are trained in prescribing and in paediatrics and dermatology. Registrars are on our teaching and training programme


  1. Puce Do private dermatologists participate in the Atopic school ?

We do not have a school and we don’t have private consultations


  1. Puce Is your Atopic school attached to a network of care givers (pharmacists, nurses, state medical programs…) ?

See above. In clinic we do have access to paediatric dieticians and psychologists (Both have long waiting lists unless it is urgent) and paediatricians and a food allergy specialist run parallel clinics as do the paediatric respiratory and ENT doctors.


  1. Puce How is your Atopic school funded ?

It is a NHS (National Health Service) program.


PATIENT EDUCATION IN YOUR COUNTRY :


  1. Puce What role, if any, do parent associations/patient support groups, play in the Atopic schools ?

The National Eczema society is very helpful in the UK and we use their literature and support a lot. They run a national ‘eczema week’ in the UK and a lot of conferences for patients in various parts of the UK and Scotland.


  1. Puce What role, if any, do schools play in managing chronic skin disease ?

There used to be a private atopic school in the South of England but this closed a few years ago I think.


  1. Puce Do you have schemes like the PAI (in France this is an individualised adaptation project linking parents, children and teachers) ?

No there is a scheme in Scotland called ‘contact a family’ (not health care professionals) which parents can contact directly. It is for children with all diseases.


  1. Puce Besides Atopic schools, is patient education developed for other pathologies in your country, and if yes, which pathologies are concerned ?

None that I know of.


  1. Puce Do you have official patient education recommendations/guidelines in your country ?

No but the NICE guidelines for atopic eczema in children to 12 years have been out for public consultation and will be published in Dec 2007 and they recommend education programmes (I am the chair of this guideline).


  1. Puce How many active education departments exist today in your country ?

In Scotland there are 4 main centres with academic depts which run paediatric services for eczema but not atopic schools. There are a large number of teaching hospitals in the UK so I’m not sure of the exact number. There are over 50 dedicated paediatric dermatitis sites in the UK which provide education on an individual basis for families with eczema. There are quite a number of specialist nurses but we don’t have the full figures for these. Scotland has about 6 or 7.


  1. Puce Are there particular organisations to train the staff in patient education? If not, where is the staff trained ?

Staff is trained at the dermatology teaching centres where there are nursing courses.


  1. Puce How much do you invoice the whole education course ?

The program is part of the state hospital service.


Thank you Susan Lewis-Jones.

Dr. Sue Lewis-Jones


FRCP, FRCPCH

Consultant Dermatologist

Dept. Dermatology

Ninewells Hospital & Medical School

Dundee, Tayside,

Scotland DD1 9SY