Tallinn & Tartu October 2014

Aims

Team

Dr Julian Forton – Consultant in Paediatric Respiratory Medicine.

Natalie Gragasin – Paediatric physiotherapist – Cardiff and Vale UHB

Katy Toms – Child Health International – Project Manager

Hosts

Dr Urve Putnik – Children’s Hospital Tallinn, Estonia

Dr Marie Vasar – Tartu University Hospital, Estonia

Programme

The programme in both centres was the same:

• Presentations on the management of CF and physiotherapy techniques to assembled staff; both physiotherapists and doctors were present.
• A hands-on demonstration of the PARI PEP system and the use of hypertonic saline to staff and patients.
• Seeing selected patients in clinic and advising on treatment.
• Discussions with the consultants in each centre to try and establish the current situation and how CHI could help to improve the CF service in Estonia.

Observations and Feedback

The clinic sessions were much appreciated; the patients seen were ‘difficult cases’ and the doctors welcomed the visitors advice. The children all had excellent spoken English and these were useful consultations.

For all patients, an emphasis on the importance of physiotherapy was really stressed. Patients were encouraged to perform physiotherapy everyday as a preventative strategy as well as receiving it when unwell. Staff were encouraged to generate daily physiotherapy plans for all patients. PEP physiotherapy using hypertonic saline as an adjunct was introduced as an effective and efficient approach to daily physiotherapy, and was demonstrated in practical sessions.

Some children were underweight and the need for optimal nutrition was emphasised, particularly the use of Creon and omeprazole. There was a discrepancy between available nutritional supplements used in UK and those available in Estonia.

Dr Urve Putnik  and Dr Marie Vasar were congratulated on the quality of their services in Tallinn and Tartu. Many discussions were of a pragmatic nature, trying to optimise care within the constraints of available resources.

One important element to CF care in Estonia will be succession training, and there were keen junior doctors present at all meetings and clinics.

The physiotherapy sessions were very successful, and some physios had travelled from Latvia to attend these sessions. The sessions emphasised proactive secretion clearance physiotherapy techniques which were perhaps less well developed in Estonia than in the UK.

The head of the parents’ association, who is a geneticist, is trying to get CF included in a proposed new-born screening program, along with other inherited conditions. She said the government is very keen to meet ‘European standards’ and felt this could an important lever in campaigning for more resources.

Recommendations

It was suggested that the next step would be to bring one or two physiotherapists from each centre over to the UK for one week to work alongside staff in Cardiff. Natalie and the CF physios in Cardiff felt it would be beneficial for the Estonians to see how physiotherapy for CF patients works in practice and fits into the full service offered by Cardiff and Vale UHB.

It would also be useful for a senior dietician to see how nutritional aspects of CF care are managed in the UK.

Dr Forton has offered ongoing support by phone or email and a number of consultations have taken place.

January 2018

Following Dr Julian Forton’s visit to Estonia we arranged for two teams, each consisting of a paediatrician, a dietician and a physiotherapist from clinics in Tartu and Tallinn, to visit the Children’s Hospital for Wales in Cardiff. They observed the multi-disciplinary team in action, spent time with their opposite numbers and attended a satellite clinic in Swansea – an organisational approach which could bring great benefits to patients who do not live near one of the major centres.