IAQ 1 (Infrequently Asked Question 1) - Do you have extra doctors appointments and stuff?

8 June 2018  |  Tamsin Kingsley

I do it myself more often than I’d like to admit. Nod along to a conversation that is going completely over my head. Either the subject matter is one of the many embarrassing holes in my general knowledge, or it’s a subject that’s so close to the heart of the ‘talker’ that they forget to explain fully in a way that someone else can understand. I worry that I sometimes make that mistake myself when talking about Izzy and our life as it is now. Maybe I have an overactive imagination, but I see the questions on people’s faces (that they are too polite to ask) when I’m talking. Occasionally they do venture to ask, and I stumble over a quick explanation of a long and complex issue, probably leaving them more confused than before. So I thought I’d do a mini series of ‘Infrequently asked questions’; questions we are occasionally asked may be more frequently thought. Basically a bit of a very non-medical insight into Izzy’s medical issues and the changes these have made to our family life.

Do you have extra doctors appointments and stuff?

I have genuinely been asked this, and had to try not to laugh, not to mock the asker but just in an ‘if only you knew’ way. This sort of question reminds me how different our lives are now to a year ago, and to those of many of our friends. I usually have between one and three appointments a week with various healthcare professionals. Our lovely community nurse comes about every ten days and does a lot of signposting us when we are worried about something, and helping make sure we have all the other appointments, prescriptions and equipment we need all lined up. Like Izzy’s personal assistant really, I don’t know what I’d do without her. We also see the physiotherapist for tips to help Izzy reach her physical milestones, the occupational therapist for help with specialist equipment to do with her low muscle tone, and the speech and language therapist for help progressing her oral feeding and also tips on developing communication. These guys usually come and see her at home which is great. Now she’s on ventilation the vent nurses also call and visit. At hospital we have appointments with respiratory medicine (for her breathing), cardiology (to monitor the holes in her heart) and surgery (follow up from her surgery unsurprisingly). The dietician usually talks to me on the phone about how much and what formula to give Izzy. In the community we have to go to audiology appointments to check how her hearing is doing (as she is more likely to have issues) and then we see a community paediatrician who is technically in charge of her care. Oh and our health visitor likes to come every now and again to check up on us. We even saw a ‘specialist health visitor’ recently as a one off.

I have to stay in all day at least once a month for our feeding supplies to be delivered, and we have to go and pick up supplies for the suction and bipap machines from a local health centre. We have to remember to order and collect Izzy’s prescription medications and dressings and of course sort out any mistakes that get made. I get daily letters and phone calls about Izzy- today the company that provided her special chair rung to say that they could come and fix it tomorrow, though it works fine for us they are obliged to sort out a fault the OT noticed. The oxygen company also appear every now and again to service the machines.

So yeah, we have a few extra things to think about.

I’m not saying this for sympathy or so people realise how ‘hard’ we have it. Rather, I’ve realised how many people do live with this kind of lifestyle with far less moaning than me! It’s amazing how quickly new things like all of the above become part of everyday life and feel totally normal. One of Dan’s many talents and passions is organising so he was already well equipped for the task. I, however, dislike talking to people, especially on the phone and am rubbish at planning ahead. It’s therefore rather convenient that I’ve spent the last 3 years learning about nhs and healthcare services in Leeds and speaking to hundreds or probably thousands of people (both healthcare professionals and patients) about medical issues, working in various roles at a GP’s. It was never my plan to stay in that job very long, but I believe God had a better plan, knowing what was ahead for me. It’s hard to explain how much this role has helped me cope with the last year, but it’s little things like understanding a lot more of both the medical and administrative terms used in hospital, knowing which battles are worth fighting in terms of referrals and waiting times, and knowing when you are being fobbed off by a receptionist who can’t be bothered or doesn’t want to help you. 

I have now left this job to be both stay at home mum and Izzy’s carer, which I love. The carer part of it really does often feel like a job, but quite a fulfilling one that I feel equipped and prepared to do. So I guess the real answer to whether we have extra appointments and work to do with Izzy’s conditions the answer is yes, lots. But I have the privilege of being able to do this as my job (receiving carers allowance), and along with the practical help we receive from friends and family I am able to relatively easily attend all the necessary appointments. I have no idea how you manage a medically complex child alongside a full time job, or other young children who you are not able to put in nursery or entrust to friends and family. However there must be so many people in this position, who feel they have to choose between giving their complex needs child access to the best possible care, and keeping their job (I can’t believe many places would let you have time off for three appointments a week) or caring for their other children.

I know everyone’s medical issues are different but hopefully this insight into our life will help you better understand what life might like look like for that friend, colleague or acquaintance in a similar situation. If you know someone with a medically complex child they will have tons of appointments/prescriptions and deliveries. I realise this can also be the case if you are a carer for a partner or parent etc. too or have medical issues yourself, but I’m focusing on parenthood as that’s what I know. Life as a parent is pretty mental, but I’m just beginning to learn that life as a special needs parent is a whole different level of crazy. And there’s lots of people out there doing it who I’m sure could do with our help and support. If you’re not sure if someone has a great support network or not then maybe you could be the start of one. Simple acts such as looking after someone’s child for an hour while they attend therapy, running errands for them or cooking a meal without first asking if they need or want it (cos what British person in the history of the world has ever said yes to that?) can make a huge difference. We have only survived the adjustment to our current life through the prayer and practical help of an amazing group of people around us, and we have never been offended by an offer of help. And I hope that as time goes by and life (hopefully) becomes a bit more stable then we can pass some of that love and support onto others.

Tamsin Kingsley

Tamsin Kingsley

I am a 31 year old living in Leeds with my husband and two children. I am a full time mum and carer to Lauren, 5 years and typical, and Izzy, 3 years with Down's Syndrome. Izzy has complex health needs mostly due to her low muscle tone, and struggles with feeding and breathing, resulting in tons of appointments and hospital admissions. Both children are happy and full of life, and our family all love each other very much.

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