Mitrofanoff Support is a small but immensely important organisation. The single biggest reason for this is the basis for the charity – it is not about doctors, nurses or hospitals. It was formed by patients, for patients and its primary aim is to provide support for patients and families who have had or are thinking of having a Mitrofanoff channel.
The group is defined by the need for a Mitrofanoff channel and over time has developed a large network of patients, relatives and healthcare professionals that have either attended group events or patient education days. There are many others who have supported us through raising or donating money. This network is evolving. I was honoured and delighted when the Charity invited me to be their Patron – naturally, I accepted and have been thrilled to be involved ever since.
Each time I attend one of the patient education days I am fortunate to meet new faces, coming along either to learn about our organization or the procedure. I often learn a huge amount by being there – different slants on care from guest speakers, as well as different experiences from patients and families. All are immensely valuable to my own experience and clinical practice.
My colleagues and I are fortunate to work at University College London Hospitals. We are fortunate to have a team of carers all working towards the care of our patients. All of us recognize the value of other team members in the care of our patients – nurses, general practitioners, radiologists, anaesthetists, nephrologists, surgeons and junior doctors. The importance of this team and of Mitrofanoff support is in understanding, preparing for, providing surgery for and managing patients with their Mitrofanoff channels in the long-term.
When a patient is being considered for a Mitrofanoff either with or without further reconstruction it is very important that surgeon, team and patient understand the options that are most appropriate for each situation. Making sure that there is a clear diagnosis and reason for proceeding with treatment as decided. This may involve additional tests or measurements as well as a huge amount of information and discussion.
Mitrofanoff channels work really well for some patients but they are not right for all. We would be cautious about using these channels if there was a problem with hand function or intrinsic bowel disease (as the channel is made using a small piece of bowel or the appendix). The other major factor is whether a patient is likely to comply with their obligation to catherise the channel alongside both their psychological and physical fitness for this type of surgery. This is not always a precise science but experienced multi-disciplinary teams offer the best chance of trying to guide both team and patient to the best possible treatment decisions.
The importance of information from your doctor and the team alongside them cannot be underestimated. There are many sources of information to accompany that. For instance, there are many medical websites, your specialist nursing team may offer a huge amount of learning material. You should read and discuss as much possible. Talk to your family and through Mitrofanoff Support you can talk to and meet people who have had the procedure before you – the charity also offers medical and nursing advice if you need it (although generally this is better coming from the team looking after you – as they will know the specifics of your case).
No matter how many procedures a surgeon may perform or other team members may see and look after – it is not the same as having been through it. Talking to other patients is a very powerful way of understanding what an operation may mean for you. Overall, this gives you a huge number of different perspectives to bring together – doctors and nurses will try to give you impartial information and an overview with figures relating to outcomes both good and bad. A personal account from a patient may be good or bad and is one person’s account – all have value but need to be balanced against each other.
You need to understand the procedure, what will happen to you in hospital and once you go home. I have said on many occasions that this type of surgery represents a real contract between a surgical team and a patient. With the team needing to provide long-term medical care, support and follow-up, whilst a patient needs to do their best to follow instructions and look after themselves well.
In addition to information, coming to a decision needs time for you to understand all that you have been told. The reason you are having a Mitrofanoff will affect the time that you have – you will probably have less time to make a decision if you are having to have your bladder removed for cancer than if you have a benign disease. We all try very hard not to put patients under pressure to make decisions but somehow a decision does need to be made. It is vital that if you have questions, that you keep asking, we will try to answer as much as we can.
If you have the chance to make it to a patient education day they are a wonderful opportunity to pick useful information from doctors, nurses, patients, relatives and catheter companies who do so much to sponsor our events – allowing the education days to be free for all patients and their families or friends. The day includes a few talks as well as smaller group sessions where you can discuss and ask questions of either our doctor or nurse.
If you choose to have a Mitrofanoff you will learn the importance of becoming your own expert and managing yourself well. You will almost certainly have to teach other doctors and nurses about what you have had done (as it is not that common) and at times what the best way of managing some problems might be.
Your medical team and Mitrofanoff Support are here to help you with that but you will gradually learn more and become very able at looking after yourself because of that.
Whatever your decision Mitrofanoff Support will look forward to supporting you in any way it can. I am privileged to play a small part in the Charity and if you come along to one our events I hope to meet you there.