Today I took Molly to the GP to talk about something completely unrelated to her lungs, but while we were there I asked about the hacking cough that Molly has now had for over 3 weeks, which is extremely slowly improving. He said he had noticed it already and that it sounded viral. ‘I’m like a mechanic who can tell from the sound of the engine what’s going on with the car.’ He listened to Molly’s chest and confirmed there were no crackles, no need for antibiotics. As the doctor then did something on his computer, I told Molly that this was the room where I brought her as a baby. I’d put her in a special baby bowl on top of scales (though not that often because she was my third baby, who breastfed extraordinarily efficiently).
I knew he’d say her cough was okay. I would have taken her to the doctor sooner if I’d been worried, but I hadn’t been. She wasn’t otherwise unwell, and nothing about the cough had pricked my antennae. It reminded me of seven years ago when I took Ben to sit in the same doctors surgery to wait an undetermined length of time to see a doctor, because I didn’t like the sound of his cough. There weren’t any appointments, and when I arrived the receptionists were saying there were too many people waiting to see doctors. Ben wasn’t that ill, but wasn’t well, and I knew the sound of that cough was wrong.
The GP listened to Ben’s chest and diagnosed a chest infection, and once Ben had antibiotics he rallied. It was a relief, because I was in the early stages of pregnancy with Molly, we had just moved house, and I was being pulled in a million directions – trying to unpack boxes before passing out with the exhaustion of growing a small foetus. One of my many worries had been Ben’s cough and I felt so vindicated that I had been right.
I’m six more years into parenting now. Still making most of it up as I go along, but feeling like maybe I at least have coughs down?
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.
When you are a parent, there are times when you really can’t be sure you’re doing it right. Much like when you thought all grown-ups knew what they were doing and then got to your twenties and realised the world is full of clueless adults, it turns out a lot of parents are winging it with varying levels of success.
Sometimes I have days like this Saturday, when my three year old found out that the ramps installed to enable his disabled brother to get out to the garden also mean he can drive his outdoor toy car straight up and into the kitchen. Then he repeatedly barged my legs, and on the back of a major toileting incident and various other small but irksome exchanges, I found myself pushing the car (with him in it) back out to the garden, with a noticeable lack of good humour. I then ignored him for a few minutes, so when my husband returned from the shops he was a little alarmed to find Max was standing at the back door screaming, wearing nothing but a pair of pants. At this point I wondered if I had any idea what I was doing.
I have many moments along this theme – wondering or worrying whether Ben’s doing enough or too much therapy, whether the boys watch too much TV, feeling bad that we haven’t taken them swimming for weeks, or that we’ve made them move house for the second time in two years, and they’ll have to move at least twice more in the next two years, etc, etc.
But then some days I think to myself… Jess, you have this job totally nailed!
Ben had a heavy cold last week, caught from me. He was snotty and a bit feverish but not awfully ill. He started to have a bit of a cough, and on Wednesday night I wasn’t very happy with it. But his temperature wasn’t that high, and he wasn’t that miserable. We put him to bed as usual, and about 10 minutes later he was sick. Which wasn’t ideal, and is relatively rare these days, but it’s not extraordinary. Then he slept well that night, which was very unusual, and by this point my metaphorical ears were pricked.
Ben hasn’t had a chest infection for over two years, but previously he’s had a lot. And I remember the sound of them.
First thing on Thursday morning he still had a bit of a cough, so I phoned the GP. We can normally get an appointment on the same day but they were short of doctors so the best they could offer was going to the surgery and waiting an unspecified length of time to see someone. Nothing sounds less fun than taking a slightly ill boy with a low boredom threshold to sit in a room full of sick people for hours so I dithered a bit. But then Ben coughed and I decided we’d go.
As we arrived, I could hear the administrative staff behind the desk talking about how few doctors there were, and that there were too many people waiting without appointments. Then the doctor came and queried whether all of these waiting people really needed to be seen today.
I was feeling a bit sheepish – on the face of it, yes Ben is disabled and complicated, but his symptoms weren’t that stark: a cough that his mother thinks sounds wrong, a little bit of a fever, some snot, and a really good night’s sleep.
We waited less than an hour before being called in to the doctor’s room. I set out my concerns, and she took his temperature (a bit high) and listened to his chest: crackles on the right! Needs a course of antibiotics!
I mean obviously I’d prefer he wasn’t ill. But the feeling of satisfaction at being proved right was a parenting high point. I know this boy. I know his lungs. And some days I am ALL OVER this mothering (*smug face).
Bridget Christie is a comedian that I love and earlier this year we went to her show about feminism, ‘A Bic For Her’. She did a bit about how people criticise feminists for having no sense of humour, but that actually the lack of equality for women is really serious and no-one ever says Amnesty International isn’t funny enough; it’s okay to be serious about stuff sometimes. Ironic that Bridget was being funny about feminists not being funny, but anyway…. I love to laugh but sometimes stuff is just annoying and there’s not much to find amusing. This post is a bit negative. I’ll chirp up next week (hopefully).
[Aside: I wrote Bridget Christie an email afterwards and she replied saying ‘it made me laugh SO MUCH’ which made really very, very happy. If you know me in real life, I will have told you this story. I tell everyone this story.]
The NHS is offering the nasal flu vaccine (Fluenz) to all 2 year olds this year. I made an appointment for Max to see the nurse at our GP surgery, she sprayed it up his nostrils, he said it tickled, we left. Done.
Ben has a flu vaccine every winter because he is vulnerable, even minor illnesses will affect him badly and it takes him a long time to recover from bugs. Ben starts vomiting at the first hint of a fever, he struggles to manage secretions at the back of his nose and throat and loses weight quickly. The vaccine won’t necessarily stop Ben getting flu, but it will hopefully reduce how sick he gets with it.
So I made an appointment for Ben to see the nurse at our GP surgery.
She looked at his computer record and noted he was allergic to eggs. This is problematic because Fluenz is made using egg. I explained that he had Fluenz last year and had no reaction, that he has never had a reaction to egg, but has routine skin prick tests because he had a cows milk protein allergy when he was younger. According to these tests he is mildly allergic to egg white.
The nurse phoned a GP in the practice (unfamiliar to me) who was unwilling to agree to Ben receiving the vaccine right then so I suggested I get in touch with Ben’s allergy consultant (based at a hospital) to see if she could advise. Off we went.
I had an email exchange with the allergy consultant and she agreed to write a letter to our GP saying that in her view there was no reason for Ben not to have Fluenz this year since he had it last year with no reaction. The letter took a couple of weeks to arrive. The consultant offered to give the vaccine to Ben in hospital but that would mean Ben missing school.
In the meantime I got a letter from Ben’s school saying nurses would be visiting the school on Friday to give children the flu vaccine. Brilliant news! A rare opportunity for things to come to us rather than us trundling around to various clinics! I filled in the consent form explaining the egg/Fluenz issue and then forwarded the letter from the consultant when it arrived.
Yesterday the nurse in charge of the school vaccination programme called me. I launched in to a historical monologue involving much mention of eggs, noses and doctors, concluding with the fact that surely, therefore, Ben can go ahead and have Fluenz on Friday.
Apparently not. The nurses going in to schools are unable to give the vaccine to any children with an egg allergy, mild or not. She suggested I make an appointment with our GP (not a nurse) to discuss it and see if the GP is willing to approve Ben having the vaccine.
This lady was friendly, chatty, warm. Everyone we have interacted with about this so far has been helpful within their realm of power. Obviously they are being cautious because it would be awful for a child to have a serious reaction to the vaccine because they’re allergic to egg.
But I found myself crying on the phone to this nurse, trying to talk as little as possible so she didn’t realise, because why do these things always have to be so bloody time consuming? Why are our lives filled which such a huge amount of crap, involving multiple calls and trips, when time is already limited? It’s no-one’s fault but it’s exhausting.
When I called the GP surgery to explain this saga, the receptionist was great and found us an appointment later this week after school with a GP who I have known for over twenty years, who can give the vaccine himself if he’s happy to proceed. I am hopeful about that being the end of it. I saw this GP last year when I needed a ‘Fit to Fly’ letter for Ben. I had written the letter in advance to minimise his workload – the GP took this letter from me, scanned it with some magical software which converted it to text, put in on his letterhead, printed and signed it within five minutes. Anyone who has interacted with NHS bureaucracy will know that is miraculous!
Son Stories by Jessica Moxham 