EPRs support new clinic for spina bifida care

The Scottish Spina Bifida Association (SSBA) has completed a pilot study of a ‘one stop’ health check clinic, using AxSys’ Excellicare to store users’ electronic patient records.

The clinic, which ran in a specially built family support centre based in the association’s headquarters, was piloted with 30 users aged under 25, who agreed or had parental consent to have their details migrated from the association’s existing Microsoft Access database to the new Excellicare system.

SSBA’s chief executive, Andy Wynd, told EHI Primary Care: “Over a six month period we wanted to test Excellicare to see if the single shared electronic patient record functionality was working in the way we needed. We had to be sure that the system was delivering the results needed to ensure that we could deliver the best available care to our patients as possible.”

Spina bifida is a fault in the spinal column in which one or more vertebrae fail to form properly, leaving a gap or split, causing damage to the nervous system. In Scotland almost two in every 1000 pregnancies are affected by the disorder.

The aim of the pilot was to look at coordinating – where possible – the wide range of medical and nursing contacts into a single ‘one stop’ health check experience.

Wynd explained: “Child sufferers especially need high quality care, and whilst this has never been a problem in the past, the need for carers and nursing staff to shuffle patient records to and from sessions was a tremendous burden on them. We set up our own database in 1998, but this couldn’t be shared between disciplines easily.

“What Excellicare has offered us is an actual electronic patient record which has helped to establish a coordinated experience for our families. It pulls together up-to-date and relevant information which is easily accessible to clinicians, family support staff and nursing staff generating considerable time efficiencies, and creating a multidisciplinary approach enabling joined up thinking and working.”

The completed record can be shared with allied health professionals who work with the one-stop clinic. Reports and referral letters can be printed and sent to GPs but integration with other systems is not yet possible.

Before the pilot, discussions and meetings were arranged amongst medical, nursing and family support staff to plan a strategy of engagement and to monitor the process at each phase.

Agreement was sought from NHS Greater Glasgow & Clyde to allow the association to access users’ medical records, with patient and consultant consent and to incorporate a summary into the Excelicare database.

Traditionally under 16 year olds would have regular reviews within their paediatric hospital and often have individual appointments with a range of clinicians at different times. The new service developed offered the opportunity for children and their families to meet all relevant healthcare staff at the one clinic visit.

Wynd said: “Our objective has been to create an environment and clinical experience from the patients’ perspective and this has been achieved. Our users no longer have to make multiple clinical visits to different sites and consultants, care and treatment is co-ordinated, location is no longer an issue and each person has their own electronic patient record which can be shared.

“This is just a small example of a very real positive change in health and social care delivery for children and young people who live with long term conditions and life long disabilities, but I believe this is a model that could benefit so many other clinical areas.”

The system now holds data on all the spina bifida and hydrocephalus users registered with the association and all 1300 individuals whose details were on the previous database have now been migrated to the Excellicare system.

Wynd said: “With a relatively small membership, an appropriate clinical setting and innovative IM&T, the association’s centre has successfully co-ordinated and developed an assessment review for our users through the pilot scheme of ‘one stop’ health checks. We now have an audit and can provide positive feedback on the new service being offered. The challenge is now set to secure sufficient funding to ensure that this service is made available to benefit all our users.”

Dr Pradeep Ramayya, CEO of AxSys Technology, said: “This project is an excellent example of commitment and innovation and proof of the important contribution that the voluntary and community sector can make to the healthcare system.

“The project also demonstrates the importance of IM&T and the difference it can make for long term care. Full integration with NHS eHealth strategy is an objective which AxSys Technology is committed to helping achieve and we will continue to work in partnership with organisations such as the Scottish Spina Bifida Association and the NHS.”

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