Living, Caring, Learning – Setting boundaries for the wellbeing of everyone in bleeding disorders care

A patient who has had a big impact on my practice is Sam (a pseudonym). Sam had a rare inherited platelet disorder and we knew him at the centre from being a teenager transitioning from paediatric services. The outcome was not as we would have wished but we learned so much during the time he was in our care, and we continue to apply that knowledge for the benefit of all our patients.

No one else in Sam’s family had a bleeding disorder. He did not attend bleeding disorder clinic appointments regularly, either during childhood or when he came to adult services. We saw him when he had severe bleeds or felt very unwell, but we rarely persuaded him to come to regular reviews. This meant we could not assess him for iron transfusions or other interventions aimed at preventing bleeds. Sam was angry with the world, and often aggressive and abusive with the care team. We were concerned that he was putting his health at risk but also about the impact his behaviour had on the nurses and other health care professionals who were providing care for him.

To try and help Sam, we followed protocols for vulnerable adults. This meant we could reach out beyond the MDT and bring in other expertise to help us gain insights and safely manage his care. These included primary care and dental services, psychology and ambulance services, as well extending to nonmedical services such as housing and benefits agencies, the local council and the police, if needed. Being able to find out more about Sam’s background helped us better understand his behaviour, although it remained a challenge.

We also needed to consider the impact of an ongoing situation with a difficult patient on the care team. We were able to access in-house psychological support for debriefing and discussion, and we used the Boundary Seesaw Model ^[1] to identify where our boundaries for dealing with challenging behaviour were too rigid or too relaxed. We agreed an ‘escalating’ series of responses with explicit limits that we could all adhere to. At the most basic level, this involved strategies such as giving a warning for abuse on the phone and hanging up if the abuse continued. Unfortunately, as Sam’s behaviour worsened, we ultimately had to find an alternative care pathway for him.

Having to discharge a patient from routine care was disappointing, but staff wellbeing and safety should never be undervalued. Being able to access psychological support was immensely helpful. Initiating vulnerable adult procedures was important and enabled additional support for both the care team and for Sam.

Having clear care plans in place is essential in ensuring that everyone understands their responsibilities and how to respond to challenging situations. The processes and procedures we followed in Sam’s case have reinforced the way we develop care plans for all patients with complex needs, tailored to their individual requirements. It is important that patients understand who to contact in different situations, whether they have a headache, cough or cold, or a major bleed – and whether that is via a standard or a non-standard care pathway. Our ageing bleeding disorders population means that we are seeing increasingly complex patients, so we need to be aware of all the specialist services they may need to access ^[2,3].

At a personal level, I feel a big responsibility to support staff. I spent time following up episodes of abuse or threats, listening to concerns and taking steps to protect people, especially specialists working on their own, separately from the MDT. However, I came to realise that I could not be everywhere and do everything. There was a temptation to think that what was happening to staff was my fault and I had to realise this was not the case. I have learned – and am starting to get better at – how to say ‘no’ when things are getting too much.