Everyone can help improve services – all it takes is an idea

Over the four years that Marie Eales has been a paediatric haemophilia nurse, she has become increasingly aware of the need for further education around immunisation practice for vaccine preventable infectious diseases.

Upset parents, she says, “were calling me and letting me know their thoughts and feelings after they’d attended a GP service or had an immunisation done at school”. Some noted that even though official guidance suggests that immunisations should be given to patients with bleeding disorders via a ‘deep subcutaneous’ route rather than intramuscularly, in practice immunisations were still being administered intramuscularly, causing bruising and bleeding.

Marie decided to capture people’s opinions and experiences by means of a survey. Among other questions, she asked about whether the immunisation was done subcutaneously or intramuscularly, and finished up with an open-ended question inviting parents offer other comments. Most, she found, were more than willing to share their views with her. While she found much evidence of good practice, where parents felt actually quite reassured with their general practitioner or school nurse, “but I also had quite a few responses that were quite negative; their experience was disappointing.” Although patients/parents often advises their GPs and nurses that immunisations should be given subcutaneously, still the injection was often administered intramuscularly, causing bleeding and bruising, as well as distrust in primary care services.

Marie concluded that the haemophilia community needed to provide more education to community nurses and school nurses who are administering subcutaneous or immunisations in the community. “It’s really difficult for paediatric patient groups because a lot of the immunisations are given between the ages of 0 and 12 months, and so it raises a lot of questions about how to manage that, when to give factor if they’ve already started prophylaxis or if they haven’t started prophylaxis, whether we miss the dose and we give it the next day. And actually, a lot of our patients hadn’t started any prophylaxis, so we would always only ever recommend a deep subcutaneous route for immunisation. But obviously, there are some immunisations that are given later on in life, as a teenager, and I think it’s a general awareness and education that needs to be more of a priority.”

Of course, there really shouldn’t be any problem. The Green Book is widely available to GPs and practice nurses, and gives the latest information on vaccines and vaccination procedures. But Marie feels that chapter 19 of the Green Book, which discusses immunisations for a flu vaccine that can be given on the discretion of a doctor intramuscularly, will raise more confusion among many practitioners out in the community.

Locally, Marie and her team have started working on an information leaflet (yet to be approved by the Trust) to give out in clinical situations. She hopes this will “give them a little bit more reassurance as to what to expect when they turn up for an appointment at their GP, and they’ve got some evidence to actually give a practice nurse or GP to say, ‘this is what needs to happen when my child has an immunisation, please can you follow this guidance.’ And it will have our contact numbers as well, so if they have any questions they can call us.”

Marie presented her work as a poster at the recent EAHAD meeting in Prague. As someone who is clearly very passionate about haemophilia, she already has ideas for her next piece of work. So if you are coming to the HNA meeting at the end of March don’t be surprised if you are handed a questionnaire!