I was appointed in February 2012 to develop a psychology service as part of the multi disciplinary team that provides a service to Haemophilia patients in South Wales. I wasn’t a stranger to the team as we had worked together in the past to help children and young people learn how to do treatment themselves. As part of this work I met a small number of families and learnt about some of the challenges they face. However I had a lot to learn about Haemophilia and the different ways it can affect peoples lives.
Who are we?
We are now three psychologists and we offer to see anyone who accesses the team in South Wales. That means children, individuals, families couples, in short anyone whose life has been affected by Haemophilia or other inherited blood disorder.
Why come and see us?
So why might anyone come and see us? Quite a few have come already and have found talking helpful. Some adults have spoken, perhaps for the first time, about the impact of past experiences as a young person growing up with a clotting disorder, others have discussed decisions they are facing about joint surgery, others have learnt ways to manage pain, some have shared the distress grief and anger they have experienced through the loss of a family member through acquired infection.
What do we do?
A number of people have been puzzled to know what we are doing in the team. Some have not liked the idea of an appointment, concerned that it might mean there is something wrong with them. Not everyone is aware of the wide range of work that psychologists do nowadays – some may be worried that psychologists only work with those who are suffering from some kind of serious mental problem. They might not know that psychologists now work in all kinds of teams in health services, for example with cardiac patients to enable recovery, and with stroke patients to aid rehabilitation. Psychologists who work in these health settings work closely with everyone in the team so that patients are offered support to cope as best they can with whatever health challenges they are facing. Sometimes this means taking time to understand a different perspective – why a teenager is insisting that they don’t want to treat themselves, why someone might be very reluctant to follow certain advice or take up the offer of surgery, or how come someone has stopped coming to appointments and isn’t looking after their health any more. At other times it means offering routine support at times of change: for example starting school, going from juniors to high school, leaving home for work or further study, expecting a baby, changes in the workplace, or at times of illness or other family disruption that can present extra challenges if you have a health condition.
What happens during an appointment?
So what do we actually do during an appointment? Most individual appointments with a psychologist involve about an hour spent talking together; sometimes the greatest benefit is to just talk, if this is the case a regular time to meet is arranged for a series of sessions to do just that. Where anxiety or low mood is part of the picture, specific therapies might be more helpful. This means talking, but in a more focused way, using particular ideas about the relationship between thinking, feeling and doing, to understand how a person is experiencing the world. Some people are less keen to talk in depth and prefer to learn more specific self help techniques that may work for them – this might include learning a relaxation technique or mindfulness. Both can be helpful when people are wanting to slow their bodies and minds down when they feel under pressure. Quite a few people have been surprised by the impact of using some simple techniques on a regular basis. Some websites and books about these are detailed below.
Bringing up a child with Haemophilia can also present challenges, parents might want to think about how best to help a child overcome their fear of needles or treatment, or how to help them tell their friends about their haemophilia. Couples may want to talk over how to manage raising children with different needs and how best to talk to their children about Haemophilia. Some child friendly books for parents and children to work on together about everyday childhood challenges are listed below.
Some common themes
These are some of the issues that have come up in our conversations with people who have come to see us.
– The dilemmas parents face when wanting to promote independence in their children while at the same time wanting to protect them from bumps and bleeds. This is especially hard if family members disagree about what is best.
– The way that upsetting family changes like divorce and bereavement can make managing haemophilia more difficult
– What it is like to feel a bit different from others at home, at work, or at school and how hard it can be to decide how much to tell people outside the family about Haemophilia
– How irritating it can be when the general public seem so ignorant about haemophilia and bleeding disorders
– What it is like to experience huge frustration when pain or incapacity prevents someone doing their usual things, at work, at school or in sport. How difficult it can be to make decisions about surgery when no one has a crystal ball.
– How annoying some children find it when hospital appointments get in the way of school or other activities
– What a positive experience it can be for children and parents to meet others who come to the centre. How important it is that people; friends, family members, colleagues, professionals ‘get it’.
Of course not everyone will want an appointment, many individuals and families prefer and do fine managing things themselves with the support of the medical and nursing team, friends and their wider family.
So the other aspect of our work is to bring a psychological perspective to the way that medical and nursing care is provided to people with haemophilia and raise awareness of the different challenges that those with a bleeding disorder face.
We know that any life long condition brings extra demands, and we aim to work with everyone at the centre to provide a service that understands those everyday demands and challenges and how they can change over time.