Our family, and Ben in particular, are pretty intense users of the NHS. I breezed through my twenties with barely a GP appointment but in the last six years we have been really getting to know the people and processes that make up our national health service.
In the last three months Ben has had brain surgery followed by eight days in two different hospitals. In that time, he has also had six outpatient hospital appointments (one of which lasted 3.5 hours and involved three different professionals), one appointment with our community paediatrician, two orthotics appointments and one visit to the wheelchair service. That doesn’t include his frequent contact with physios, occupational therapists and speech and language therapists at school.
Making our lives the best they can be relies on building relationships with good doctors and therapists, and when the NHS works well it works really bloody well. This was really been demonstrated last week.
(Photo of Ben in a hospital waiting area. Every time we go he stares avidly at this explanation of wind speed measurement until we read it to him.)
On Tuesday we went to a clinic we had never been to before, where Ben was seen by a consultant paediatrician, a specialist speech and language therapist and a specialist technologist in order to look at the way he communicates. Before we even got there, the team had already made contact with our community paediatrician, three different speech and language therapists who have worked with Ben, and asked us to fill out a questionnaire. Ben’s school speech and language therapist came to the appointment with us, and after hours of working with Ben and much chat, everyone concluded that they needed to spend more time with him. So all of those professionals will visit Ben at school in the coming weeks and months and then we will meet again.
Later in the week we saw Ben’s neurologist, let’s call him Dr D, who we have now known for the entirety of Ben’s life. Following a discussion about Ben’s brain stimulator, he called the neurologist who fitted Ben’s stimulator (at a different hospital) to check he would see us at another appointment next week. We then ran through all of the major aspects of Ben’s life, discussing progress and options, and he warned us (in a friendly way) not to underestimate Ben’s intelligence.
The same night, at 6.30pm, I got a phone call from our GP regarding recent problems with Ben’s medication. After discovering that there is a national shortage of one of the medicines that Ben takes daily, he had called the hospital pharmacy and one of Ben’s neurologists, and had worked out a way of us getting the medicine in the short term until the normal supply is resumed. He had made about six phone-calls on Ben’s behalf, to find a solution, and only called me when he had fixed it.
I would like to take a moment to give some advice to anyone who finds themselves in a situation similar to ours, who sees as many doctors as we do. Our GP practice is the one that Ben was registered with when he was born. It has not been the closest surgery to our house for several years but I took a view that I would rather have the consistency of a practice I knew and doctors I respect than move to a more geographically convenient surgery. Of course I get frustrated with their phones being engaged and with nurses who won’t give Ben the flu spray, but these niggles are far outweighed by having access to a good GP who knows Ben and the rest of us.
Similarly, Dr D is based in our local hospital where the outpatients’ clinic is always too hot and there’s nowhere to change Ben. There is another hospital a bit further away, that has a fancy new children’s hospital building, excellent changing facilities for disabled children and a Marks & Spencers Food shop.
It has been suggested to us that we should move neurology consultants and have everything at the other hospital, but I can’t quite tell whether this is because they think the doctors are genuinely better at the swankier hospital or because they have been seduced by the surroundings. Either way I see no reason for us to move – Dr D is excellent, knows Ben, knows Max, knows us, and calls doctors in the other hospital on his mobile to talk about Ben if he needs to. Most importantly, we like him and, as far as I can tell, he likes us. So we’re sticking with him for the time being, and if that means buying a limp ham sandwich for lunch rather than having the option of M&S sushi, then so be it. If you find a doctor you respect, stick with them.
I haven’t familiarised myself with the recent specific arguments between the Secretary of State for Health and junior doctors, largely because I’ve been spending a lot of time sitting in hospitals. But it is worth taking some time to appreciate the level of commitment and expertise of the doctors (senior and junior) involved in Ben’s care, how hard they work to solve problems, how late they stay to resolve medication issues, and how very nice they all are about it.
Son Stories by Jessica Moxham 