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struggling now with the NHS.

(2 Posts)
Theas18 Mon 25-Feb-13 17:43:21

Don't know if you read my post in january. Dad has tonsillar lymphoma. He's 89 and quite crumbly.

I know more than most that the NHS hasn't any money, so I'm very fed up indeed that we have gone to at least 2 (and probably 3 appointments at which bugger all happened- well except I took a day off work, drove 90 minutes each way to take them to the local DGH 25mins away, then back home and me home...and we were no further forward...

Had 1 appt with ENT, biopsy taken. THat was useful. REview ENT appt to be told lymphoma (which GP already told us) waste of time.

Haematology- one sort of helpful appointment that said " he's too crumbly for chemo" - yup I can see that. Sent for PET scan to see if had spread. Return visit to get result of PET scan (no spread yay) .... See oncologist to decide radiotherapy...

Saw oncology- very clear they don't think he's fit for radical radiotherapy either, but can have a week of palliative treatment (bugger..) So WTF did we have the PET scan and 2nd haematology appt. Waste of everyone's time and money. Never mind allowing us to think was cureable, silly us.

NOW we need mask making and radiotherapy doing. Yes it's getting bigger and yes he's getting worse.Told mask within 1 week and therapy in 2....

THat was friday (at the appointment they offered me a whole 23.5hrs before he had to be at the hospital... of course we can all drop everything at 23.5hrs notice for our Dads..) .

Now they tell me mask fit 7/3 (yes the " less than a week" is now 13 days). I said " bugger that" well i didn't I was all british and said " umm couldn't it be any sooner we were told less than a week".

Trouble is we are seriously running out of time. What Dad gets pleasure out of in the whole world is seeing the kids do stuff and there are concerts and musicals in the 2 weeks up to Easter that he must be fit for. If I don't hear back today I'm going to the consultant tomorrow I think...

LadyMaryQuiteContrary Wed 27-Feb-13 13:02:31

Hi Theas.

This sound horrible for you all sad You should be able to access the Macmillan nurses in the hospital, they are amazing and will be able to help you by giving you all support and practical advice regarding benefits (if you need it).

The NHS can be difficult for patients to navigate and it doesn't always work efficiently. It's OK to speak up and tell them their mistakes though. The PALS service can help you with this as well, they are there to support the patients and to listen to their complaints. They then take the complaints to the hospital.

In the mean time your dad shouldn't put his life on hold while he's waiting for appointments. If there's things that he wants to do he should go ahead and do it. I do tell this to everyone though, whether they are sick or not, so please don't take this the wrong way.

I really do hope you manage to get this sorted soon.

thanks

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