Multiple OP appointments and working full time

[itisitis]

How do parents cope with multiple hospital appointments for their children, when you work full time?

To put into context, I have two children. Eldest has recently undergone major surgery. I spent two days in hospital with her, utilising carers leave, but for the next 12 months she will have 3 monthly OP checks. 13 months post surgery, she will have another op to remove the pins and plates holding everything in place, and will require extensive physio.

Youngest child was born with a neurological disorder, which effects the ability to cry, feel pain and is unable to judge dangerous situations. Up until now, her eye and neuro apps have been 12 monthly, but due to a deterioration in her sight, she will be seen 3 monthly. It's likely she will have an operation in the next 12 months.

Today I receive a call at work to say my youngest child was experiencing chest pains, and had been blue-lighted to A&E. I hurriedly left work, hardly giving any time to explain to my boss what was happening as I just needed to get there. I'm a single mum, no family within 60 miles. Around 3 months ago, youngest was diagnosed as anaemia and has been taking iron medication. Long story short, the anaemia is narrowing her heart valves, hence the chest pains. We're home, with a referral being sent to paediatric cardiology for urgent review.

How on earth do I cope with all these appointments and work? I work for the NHS, so my annual leave is generous, but with no childcare, I rely on these days for school holidays. I get 5 carers leave days a year, which I've utilised from the last calendar year. I understand their are parents out there who have children with many needs, I don't want to sound petty in comparison. But I just don't know how to cope with it all 😥

Google parental leave, you are entitled to take days to care for dependents but these will be unpaid so you will lose wages, however the amount of separate periods off you take are not limited.

My heart goes out to you. Childcare and work can have its moments with a child without extra health needs. It can be far more challenging and increasingly so the more health needs a child has.

I have to admit after 12 months of being in BCH with my son for far longer than I managed to be at work [with flexi, a supportive boss who would allow urgent unpaid leave] I had to throw in the towel. He had four seperate hospitals across the region and at least three appointments per week when he was well enough to be home. The childcare I arranged simply could not cope with the increasing extra needs and I ended up paying for 1;1 nursary care for him when he was not in hospital. His childcare meant I could only cover the costs of going to work. It did not leave me with dispossable income for anything.
In the end the DWP advised me to claim disability benefits for him and then carers allowence. Sadly that left me finacially better off and took the constant stress of juggling worry for him against work away.

Would it be worth asking to have a talk to your employer about all this esp' as your poor daughter now has an additional heart health concern for you to juggle? At the very least they may be able to put something in place allowing you to simply go to her if she ever needs another urgent admission via A&E.

Thank you for your replies. I didn't realise I could take unpaid leave, so I will certainly look into it. The lack of wages wouldn't bother me too much as I always put a bit away each month for a rainy day, and at the minute I feel like it's pouring.

I have spoken to my boss, but she's relatively new, doesn't have kids, and doesn't really understand. My old boss was a little more accommodating, I could work from home, flex around appointments, but now they're more frequent maybe he wouldn't have been understanding either. My boss has requested that all appointments be either before 10am or after 4pm, and all I can do is ask when I get the letters through.

I had a look at things, and in the next two months they have 6 appointments between them. Only one falls in Feb half term 🙄

I had to cut my days down to 3 days a week, with the help of my daughters health care professionals we were able to arrange for her physio/speech therapy/occupational therapy/psychologist appointments on my days off (at one point we were going for multiple appointments on both my weekly days off) unfortunately her many consultant appointments are usually on the days that I’m working and so have to take unpaid days.

Any possibility of 4 longer days and a flexible day off each week? Obviously impacts on childcare but if you can change your day off to accommodate appointments would help.

I have a very understanding boss thankfully, and he has been around since my daughter became ill so has seen it all. That aside I did have to change my hours to work opposite DP so that we have someone on standby every day and one of us can always make her appointments. It's not easy, but it works for our family. DDs Dad is around but has never once been to an appointment or cared for her when ill.

I've been with HR today and it's been decided I would do the 9-day fortnight. I don't have any family around, and all of my friends have children of their own. But what I do have is wrap around care in terms of breakfast and after school clubs. So we will all now do longer days, with a view to arranging appointments on the one day per fortnight that I have off. It sounds like a bit of a slog if I'm honest, but it's enabled me to keep my job which is the main thing.

I couldn’t work when my child had multiple appointments- it was just too much. Now I work part time and try and arrange them on my days off or have to take annual leave. It’s really hard - you definitely have my sympathy