Every person in the UK who reads newspapers/ watches TV/ listens to the radio/ accesses any digital news must be aware of the tragic, appallingly mismanaged case of Ashya King and his family.The Prime Minister has commented in a personal capacity, and there has been near unanimous support for the family from across the media spectrum. I listened to a phone-in programme on BBC R5Live today, and was struck by the compassion and common sense displayed by the overwhelming majority of contributors – quite rare for a radio phone-in!
The inappropriateness and heavy handedness of the action by Hampshire police has been discussed at length, and under different circumstances it would be amusing to see the speed at which the police have blamed the hospital for the extent of the police action (we were told by the doctors that Ashya’s life could be in danger within hours when his feeding pump runs out), and the way in which they have also implicitly blamed the hospital for a six hour delay in notifying them of Ashya’s disappearance. The situation at the time of writing has become even more ridiculous, with Ashya lying in a Malaga hospital, being cared for by staff who presumably do not speak English, but with his siblings being prohibited from seeing him (although, in a cruel twist they are allowed into the hospital). Meanwhile his parents are in custody in a Madrid jail, and having refused to go voluntarily to England, they will stay there for up to a further 72h. During this time the Spanish judge will read medical and legal papers to decide whether to grant bail, and if so the terms of bail. Formal extradition proceedings will start, which could take months. In that time (given the limited information that we have about Ashya’s medical condition) it is possible that Ashya could die.
It is clear that the train of events, wittingly or otherwise started by Hampshire Police, has now developed an unstoppable momentum. I am unclear about whether any single person now has the power to call a halt. David Cameron cannot override the legal process, and establishing whether the process is indeed legal could take many months, with respected legal opinions arguing both sides. Pandora’s box has been well and truly opened and the consequences for Ashya and his family will be catastrophic.
It is abundantly clear that it is almost certain that this whole debacle could have been avoided. Hindsight is a wonderful thing, but I suggest that the majority of complaints written by patients (or their relatives) and received by doctors stem from a single cause – failure to communicate. Listening to people tell their own stories on BBC R5Live today it was easy to spot those whose doctors had failed to listen. Several people told similar stories of doing internet research of their illness and presenting this to their consultant, only to be dismissed. One contributor (who I think was a senior nurse) actually said on air that patients shouldn’t believe what’s written on the internet, but should listen to the ‘experts’. Sadly this paternalistic attitude which was prevalent in the 1980s is still surprisingly widespread today. Until recently I was one of the ‘experts’. 50 years ago it might have been possible for UK consultants to keep reasonably up to date in their specialty by chatting to colleagues and reading a couple of medical journals regularly. There are now over 11,000 English language biomedical journals published each year so it is obviously impossible to read even a fraction of what is relevant. I used to subscribe to three specialist journals (as well as the BMJ), each one published monthly, and I never in nearly 20y as a consultant managed to read all of them. The advent of the world wide web, and the increasing availability of open access online journals makes the information on offer to the expert even more overwhelming.
Patients and their relatives have a more compelling incentive to research the minutiae of their illnesses than even the most dedicated consultant can ever have. Ashya’s brother told of how his father spent many hours, late into the night, trawling the internet for information. I know how many hours it can take to thoroughly research a simple case report for publication. NHS consultants simply do not have enough hours in the day and night for academic research on top of their clinical practice. My initial consultant contract allowed 3.5h a week for all academic activity (reading, internet research, preparing lectures, writing articles for journals as well as conducting my own research). More recently I know that consultants have been told that this is being reduced to as little as one hour a week, and it has been suggested that this time is in fact unnecessary.
I will be honest, and admit that in the early days of the internet it was quite intimidating when a patient walked into the room with a file full of papers about their condition, many of which I would inevitably have no knowledge of. Doctors have a natural tendency to become defensive in such situations, and to revert to a position of authority and ‘I know best’. However, I had to ask myself what I was frightened of. Why did I feel threatened? Was I afraid to say that I didn’t know everything? Of course not – nobody can know even a fraction of everything. Was I worried about losing my status? Here I think lies the problem for many doctors. I realised that I wasn’t, because as a woman who worked in a speciality where I had never hidden the fact that I was a mum as well as a doctor, where I had worked until the 38th week of pregnancy (difficult to stand on one’s status with a big bump), it wasn’t status that bothered me. For me it was the legacy of a medical education that somehow implied that if I didn’t have all the answers I was failing.
I very quickly worked out a method for dealing with all the sheaves of information that I was given. Firstly I was very grateful – the patient had done hours of work for me and presented me with the outcome. I think it is important to establish that the patient is your co-researcher in an enterprise to determine the best plan of management for them. Dare I say it, I think that the many medical graduates who received private school educations find it inherently difficult to treat their patients as equals. With my co-researchers I discussed a very rough hierarchy of sources of information, but this doesn’t mean that I would dismiss evidence from unconventional sources, particularly self-help organisations. Sometimes I would take information away to read and discuss it at a future appointment. Of course this approach is time consuming, and it requires continuity of care. Both of these are being eradicated by the business/ outcome driven models of the new NHS, and the inability to practice good medicine triggered my retirement from the NHS. I would argue that although continuity of care (rather than sending the patient round different members of a team, and returning them to primary care as soon as possible) and longer outpatient appointments/ additional follow ups may appear to be more expensive, in the long run it saves money. Patients understand their conditions better because they have established a trusting relationship with their doctor, and they have more realistic expectations about long term outcome. Most importantly because they have been established as co-workers they take responsibility for their own health rather than staying in a model of dependency.
For whatever reasons Ashya’s parents’ relationship with Ashya’s medical team had clearly broken down. Some years ago it was my own experience with my own small child that doctors working with children do not always treat the mother as an ally, and can be surprisingly dismissive of a mother’s opinion (even when in my case the mother is a doctor, the child her fourth, and the treating doctor is childless). I hasten to add that I have also had very good experiences, but when my children were older. Whatever the treating medical team thought they had said or explained doesn’t matter, because the King family heard something different. Personally I think that if there is an impasse with a patient then this has to be recognised without attributing blame, and the patient should be offered a second opinion. Professor Karol Sikora was talking about this today. He said that all legal proceedings should be dropped, the family should be brought back to London together (with assurances that they will not face any prosecution) and sent to see a completely new medical team at Great Ormond Street hospital or the National Hospital for Neurology & Neurosurgery. I am sure that this is the way forward for this family, although I’m not sure that it can be done so simply.
In the long term however we as doctors have to get much better at communicating with our patients. The Royal College of Psychiatrists explicitly recognises the role of patients as collaborators in care, and its service user and carer fora are an active part of the college. We have to learn that communicating doesn’t just mean telling, more importantly it means listening.