Appreciating good doctors

Our family, and Sam 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.

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In the last three months Sam 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.

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(Photo of Sam 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 Sam 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 Sam, and asked us to fill out a questionnaire. Sam’s school speech and language therapist came to the appointment with us, and after hours of working with Sam and much chat, everyone concluded that they needed to spend more time with him. So all of those professionals will visit Sam at school in the coming weeks and months and then we will meet again.

Later in the week we saw Sam’s neurologist, let’s call him Dr D, who we have now known for the entirety of Sam’s life. Following a discussion about Sam’s brain stimulator, he called the neurologist who fitted Sam’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 Sam’s life, discussing progress and options, and he warned us (in a friendly way) not to underestimate Sam’s intelligence.

The same night, at 6.30pm, I got a phone call from our GP regarding recent problems with Sam’s medication. After discovering that there is a national shortage of one of the medicines that Sam takes daily, he had called the hospital pharmacy and one of Sam’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 Sam’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 Sam 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 Sam the flu spray, but these niggles are far outweighed by having access to a good GP who knows Sam 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 Sam. 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 Sam, knows Eli, knows us, and calls doctors in the other hospital on his mobile to talk about Sam 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 Sam’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.

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Advice

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Late last year I gave a talk about Sam and myself to about eighty paediatricians taking part in a training day at the Royal Society of Medicine. I had twenty minutes to give ‘A Parent’s Perspective’. The main challenge was to edit sufficiently to fit within time – given the opportunity there is much I can think of to say. If I were allowed to do Mastermind with Sam as my specialist subject, I would blitz it.

They were a receptive audience and gasped (‘Sam had 157 appointments last year’) and laughed (niche jokes about junior surgeons’ lack of interpersonal skills) at the appropriate points. I was asked a number of very perceptive questions at the end, but I was really struck by one:

“What do you wish you had known, or had been told, when Sam was born – and what would you advise someone just starting out on a similar kind of life to yours?”

I didn’t immediately know how to answer this, but after a momentary panic in front of a large audience, I thought of something and here I will expand on it.

When Sam was in hospital just after he had been born I was expressing breastmilk for him, something I was finding relentless and dispiriting. A breastfeeding support worker put me in touch with a woman I will call E, who had expressed for over six months because her child had difficulty feeding.

Once Sam came home from hospital I couldn’t keep up with a brutal regime of pumping, bottle-feeding, tube feeding and sleep deprivation, so I stopped expressing milk. But by that time I was in touch with E anyway, and she came round for a cup of tea. She told me she thought I was doing brilliantly which was incredibly encouraging.

Meeting her in the first few months of Sam’s life was hugely important. Her son was very different from mine, with a totally different condition, but there were similarities between our lives – not least the shock of realising things are not (and probably won’t ever be) as you expected.

Most importantly, she was heavily pregnant with her second child. The idea that she had been able to accommodate all of the difficulties of her first child sufficiently to decide to have another one gave me hope. Not just that it might be possible to have another child, but that our lives might one day be as optimistic.

I stayed in touch with E and we met periodically, through my emergence from the fug of the aftermath of Sam’s birth, and the births of my second and her third child. It was comforting and fun.

This kind of camaraderie is not unique to parenting a disabled child – much of the success of NCT is because new parents need solidarity and someone who understands the challenges and joys of a brand new baby. But finding yourself talking to a parent of a disabled child is a bit more niche and therefore perhaps a bit more special. There is huge solidarity and comfort in talking to people who have experienced similar difficulties to you, who you don’t have to explain everything to. It is most uplifting if those people are thriving, but actually any contacts will do.

I have since met many other mothers of children who are disabled, complicated or simply non-typical. I tend to find these conversations are accelerated – with no need to do as much explaining, we will very quickly be discussing private feelings and traumatic experiences. We recognise the similarity of our lives, and our subject matter touches on all of the most intimate and important aspects of being human: what your priorities are, who you were and who you have become, how and who you love.

Or sometimes I’ve just had a chat about purely practical matters. No deep connection, but getting the number of a good physio is valuable. Sometimes having a disabled child in common is not enough, and someone is just not my kind of person, but that’s fine. Sometimes things are not going very well and I just need to hunker down and get through it, not talk to anyone.

Over the years these acquaintances have come in many guises – friends of friends, women from the supermarket, bloggers, parents accompanying their children to sessions at Small Steps or fellow students on a course. I have valued these connections hugely.

So if I met myself five years ago, I would say find some friends who have been in a similar position. Either online or in your city. There are people who have survived a life like yours, and many who have thrived. You are not alone.

(You could always send me an email)

P.S. These photos were taken by my brother-in-law, a paediatrician, who attended the conference. People thought he was really weird and a bit obsessed with me and Sam until they realised he was related to us.

P.P.S. I think of my approach to make-up as quite restrained. These photos would appear to show otherwise.