Haemophilia is a rare bleeding disorder and, although the condition is genetic, as many as 40% of cases have no family history. The easy bruising associated with the condition can lead to the suspicion of child abuse, making the situation even more distressing. Advances in healthcare services and treatment, including Baxter Bioscience’s Advate (the first and only clotting factor treatment which does not use any blood components) mean that the future is now brighter for those diagnosed with haemophilia than in the recent past. However, this also means that, due to home treatment, far less time is spent in hospitals, meaning parents rarely meet one another and often lack a support network.

The difficulty parents have in coping with diagnosis was reinforced by a patient group survey. As market leader Baxter Bioscience felt that they wanted to create partnerships in haemophilia that would support new parents and relieve pressure on specialist nursing services.

WHAT WE DID:

After agreeing the way forward was a mentoring scheme, we engaged a motivated paediatric haemophilia clinical nurse specialist to agree the scope and outline. We then gained endorsement for the project from the leading, international, paediatric centre, Great Ormond Street Hospital (GOSH). We audited all existing patient literature on haemophilia of relevance to parenting and identified experts in areas where little information was available. We then interviewed various experts and drafted a pack of materials including topics such as: how to cope with falls; how to brief a babysitter; how to deal with the carers benefits system; and what to expect from nursery or school situations. To review the pack for currency, scope and language we convened a working group, which included a clinical nurse specialist, clinical director, social worker, Haemophilia Society representative, expert parents and expert patients. We then gained the endorsement of The Haemophilia Society and the buy-in of haemophilia care centres for the programme. Finally we used the resource pack as part of the training programme for parent mentors.

RESULTS: