I could really do with some advice please

[MrsWhirling]

Hi all,

I could really use some advice regarding my mum and her current treatment on the NHS. I'll try to keep this as short as possible...

Back in Feb during a Gastro CT a mass was seen on DM's liver. She waited 3 weeks to be referred to a Liver specialist who ordered a PET Scan which is commonly used to detect Cancer.

She waited a further three weeks for the results which were not conclusive. The consultant advised a biopsy for which the appointment took 2 weeks to arrive. After the first was canceled after a 12 hour wait due to bed shortages, there followed an overnight stay in hospital & further 3 week wait to see the specialist for the result.

On the day we were told the biopsy was unsuccessful as not enough tissue was taken for analysis and another biopsy was needed. 3 weeks on we are still waiting to receive an appointment.

Yesterday DM was sent a questionnaire asking about her Cancer diagnosis - obviously this was very distressing as she has not yet been diagnosed with anything!

I'm just wondering what to do. I have spoken to our lively GP who has written to the consultant to hurry this up, I have tried PALS and to bd honest, they were useless.

Do we just sit quietly? Kick up a fuss? What would you do?

Thank you, sorry got such a long post xx

It sounds immensely frustrating, MrsW

I think I would be making quite a fuss, but I'm not sure (never having done it) how I would go about that.

So am bumping for you, and hope the GP's letter helps. If you don't hear back soon, I would go back to the GP and ask for more stringent demanding - it really does sound outrageously slow.

Any chance you could pay privately for the biopsy to be done with same consultant, and then slot back into the NHS system after?

I know its not entirely right to do the above, but with all the waiting you've been through, your Mum deserves to know.

Can you call the consultants secretary thats all ways a good place to start. Be polite but firm and explain you are worried and this letter has caused a great deal of stress.

Would you be able to go at short notice? A cancelation etc. If so then say this.

Hope you are able to get this sorted, and I am sure someone with better advice will be along in the moment.

Don't just wait - kick up a fuss
Chase them...phone the appointment dept -find out how long an appointment should take, when your mum's appointment is likely to be and make sure she hasn't fallen off the list.
Ask them for help ...
Don't get stroppy but do allow yourself to be distressed.
Tell them about the questionnaire....and how upsetting it is for your mum...and for you
Hope everything turns out ok - good luck.

No you need to kick up a fuss (and I say this as a HCP). It's not unusual for biopsies to need to be repeated but you shouldn't have had to wait that long for the initial biopsy or for a new date.

As a PP said I'd phone the Consultant's secretary first of all. Be calm but firm and explain the situation. You can ask to speak to a member of the team. Does your consultant have a specialist nurse you can talk to?

I'd also be tempted to put your concerns in writing to the consultant with a copy to the PALS team (and maybe even the Clinical director)

What a stressful time for you.

Thank you everybody for your great advice. I'm going to ring the consultant's secretary first thing tommorow morning. I had suggested to mum to have the procedure privately but she is a real believer in the NHS and refused point blank. The whole thing has been incredibly stressful, I also have DD5 & DS6mths, to be honest I'm surprised I haven't had a breakdown. Mums my bestfriend & I am keeping everything crossed that it is (finally) good news. Xx