Should I complain- 3 appointments rescheduled in 2 weeks

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Hi, im sorry this is going to be a long complicated post but i will try to make it as simple as possible. Little back story,my partner is my carer as i have my own health issues,ive been trying to get him to go to a dr for over 2 years as we thought he had ibs or an intolerance to food/allergy which he had been trying to work out what effects him worst. He finally went to the dr and was recently diagnosed with a large rectal tumour at a colonoscopy on 2nd December,he was told it looks like cancer and to start taking regular laxatives instead of things like buscopan or immodium. I bought the first box and got him to ask a dr for a prescription of them but he was told to wait until we see oncology and ask them so we have been buying them £9 a box every 5 days (thinking we only had to buy another 3 boxes until he could ask again)
In the mean time - he had an mri 3 days later and a ct scan was booked for 14th with an oncology team meeting booked for 21st. The hospital phoned a couple of days after the ct scan appointment was arranged and rearranged it for 23rd. On the 15th the oncology department phoned and said they didn't realise the ct had been moved and now need to move the team meeting appointment from 21st Dec to 3rd January. I was already not happy with what seems to be a lack of communication and co ordination and obviously the extra stress of having to wait even longer has given me alot of lack of sleep as I'm terrified for him,he is taking it in his stride and doesn't want me to complain.
my partner was taking paracetamol and ibuprofen to help with the pain but the gp wants us to ''manage his pain with paracetamol and stop the ibuprofen" until my partner gets to the oncology appointment now on 3rd jan - its not working and he has been in lots of pain over the last 10 days. I have lived with pain on a daily basis for years and think its unacceptable for them to leave him like this when there is something that could be done about it and I'm really annoyed.
So this was the situation until yesterday when I went to dr and made him come in with me, it happened to be the same dr he saw so he cheekily asked for a prescription for himself for the laxido and I quickly explained we were on UC and didnt pay for prescriptions, the dr did then give him a prescription for 2 boxes only and not a reapeat..the hospital then phoned him and booked in an appointment for the 2nd Jan with a colorectal surgeon in the morning (so I scheduled MY chest xray for the afternoon on the same day thinking we would save on fuel and parking) less than 24 hrs later they have now phoned to change his appointment to the afternoon.
I'm thinking of taking a break from hassling the Dr's to find out what is going on with me because I feel his appointments are far more important but he doesn't agree and thinks we should carry on trying to fit them around each other
Should I complain about how the hospital are dealing with his appointments?

Hello Red123

I am sorry to hear that your partner has been diagnosed with a rectal tumour that looks likely to be cancer. This must be very worrying for you both, especially as he is also your carer.

1. I found during my own cancer journey once I had a diagnosis that my own GP was reluctant to prescribe anything and preferred it to be done by the hospital. He would only issue a repeat prescription if I ran out for a medication that the hospital had previously prescribed.

It's a shame that when the hospital told your partner to stop the imodium/buscopan and to take laxatives that they did not issue a prescription for them. £9 a box is expensive and these costs add up. Once your partner gets a firm diagnosis then he can fill out a form at his GP surgery for free prescriptions for 5 years.

2. I can understand why you are worried and it certainly does seem a lot of chopping and changing with the appointments. It must be very stressful for you both. There does seem to be a lack of co ordination between the different departments. I had similar, but not to this extent- during my diagnosis. I think that sometimes they just try and fit you in on their own lists and then if one thing is moved then the rest have to be. I had a couple of times when things were supposed to happen but didn't due to results not being ready for a weekly MDT meeting. This delayed other things and was really frustrating at the time. With a probable diagnosis, you just want answers and things to move forward.

3. I am sorry that your partner has pain that is not being managed by paracetamol alone. Is there a medical reason for stopping the ibuprofen, I wonder? I believe that it is not right that he should be left in pain if there is something that could help. I would suggest calling NHS111 (as it's the weekend) and asking for some advice. They may be able to direct you to an NHS urgent care for example where some pain relief could be prescribed. Alternatively you could possibly ask a pharmacist for advice- there may be something over the counter that is slightly stronger than paracetamol that could be trialled. Being in pain is miserable so please do ask for support.

4. Am glad that your partner managed to get some laxido on prescription. I suppose by giving the 2 boxes he was hoping it would last until the appointment and then the hospital could maybe assess it for him. There would be no harm in asking for a repeat afterwards if needed. It must have been frustrating to have another change in appointment so soon and that it is difficult with your own health and appointments. I wonder if it is worth talking to them about him being your carer and to try to take this into account with appointments. If his diagnosis is confirmed and he is given a CNS/Macmillan Support Worker- maybe this is something that can be talked about.

5. I think your partner is right. Your health is also important and although this is a difficult time for you both trying to sort these appointments- hopefully once he has got a firm diagnosis and has a treatment plan put in place things may become more manageable. I would try and hang in there for the time being to get you both sorted.

6. If you do decide to complain about the way the hospital is handling the appointments then this link may help. I suppose at the very least it would help them look at their systems and see if there is any potential way that they can avoid this in the future. Sometimes as well just being able to express how we feel can help and a sorry can go a long way. Maybe have a look at the link and see what you think. If you wanted to talk things over first then perhaps give the Support Line a call and speak with one of the advisors. The number is below and they are there from 8am -8pm

What is PALS (Patient Advice and Liaison Service)? - NHS (www.nhs.uk)

I hope this helps a bit. You certainly have had a lot of changes of appointments as well as the medication issues.

I hope the next appointment can go ahead as planned and that you both get some answers. In the meantime, we are here if there is anything else you need.

Jane

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm