Feeling let down

My Hubby was discharged from Addenbrookes two weeks ago, with the promise of a neurosurgery outpatients appointment in four weeks.

Just phoned to try and chase up appointment only to find it is not even scheduled yet and likely to be at least May.

He was meant to be in back brace for four weeks post discharge but be reviewed before discontinuing.

Rehab appointment has come through for September.

Really feel abandoned by the system at the moment. Seems people have to recover not at their own speed, but the hospitals.

Hopefully rehab will be quicker than they are expecting, five months, ridiculous.

Feel very let down by all.

13 Replies

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  • Sadly it seems to be the norm in the overstretched NHS. Consultants will say that the outpatients apt needs to be in so many weeks but they say it with no idea as to how many patients also need to be seen in that clinic. Because clinic time only has so many apt slots it often seems that patients cannot be fitted in to be seen when there condition or recovery should be being reviewed or followed up. I certainly have frequently found my follow up apts have occured beyond the specified time.

    It is upsetting and frustrating when progress/rehab gets delayed because the OPA is more weeks away than specified. I know Emma/Brokendoll on here ended up in her neck brace for many weeks longer for the same reasons of no available opa and like for your hubby although she had been told that the brace should be taken off within x amount of weeks she couldn't do that until she had been reviewed and advised it was indeed definately ok to do so and how to go about it (eg she had to take it off for a short period each day initially).

    I can empathise with you feeling of abandonment as likewise for BI the services post discharge are not available for most of us unless we happen to live in an area with a good BI specialist service. It is a postcode lottery of what is available or not.

  • Welcome to the NHS post hospital discharge.

    I was expecting a telephone appointment on Tuesday regarding a referral to a Neurophysiologist but it never happened, now I await a letter but Easter of course is in the way so I can't chase anything up til next week, post code lottery strikes us all!!

    Hopefully your hubby keeps on improving xxxx Janet

  • Make sure you tell them you are available for any cancellations, you might get in earlier then.

    It is disappointing and frustrating but just hang in there.

  • I can only echo what has already been said... It is frustrating.... but if you run into difficulties once he is home and the appointment wait time is overly long give the consultants secretary a call...

    explain the situation and ask if there is anyway you can be seen/speak with the neuro before whatever (ridiculously far away)date you are given.

    Although they would never publicly admit it, the secretaries do have the discretionary power to add people to clinics if warranted and they can arrange a telephone consultation with the neuro...

    I find being sweet to the secretaries can really pay off when you are desperate.

    Hope things go well... and if all else fails, there's usually someone here if you need to let off steam ;)

  • Yes Anne, I too have received good support from secretaries on 2or3 occasions.

    They have the power to shuffle things around if & when they're made aware of a deserving case.

    I can identify with the feeling of abandonment but, unfortunately, it's what most of us have experienced. I found it a great shock after such intensely caring treatment to find myself cast out into what felt like a 'wilderness'.

    I hope your husband will improve with a little more time and plenty of rest.

    Regards, Cat x

  • I understand exactly how you feel. My dad came home in January after 5 months in hospital, he has poor communication now, limited understanding, cannot write and talks nonsense most of the time, we were told he needed speech and language therapy to give him the best opportunity of improving his communication which he received twice a week in hospital and it would continue when he was discharged...... his first appointment is the middle of May, approximately 4 months after being discharged!

    You must feel let down by a system that you now rely on more than ever. Hope you get more support soon.:-)

  • I agree with others' comments and I forget s comments. Being seriously sweet to the secretary does work. I used to work as a medical secretary and I would often speak to consultant and describe their predicament , and he would fit them in at the end of the clinic,. Goood lick

  • I mean good luck, not good lick, I'm not a dog :)

  • The system at addenbrookes is not very efficient! The Secretary makes the appointment with the consultant but I.t have to put it into the system! Its crazy and a waste of time! None of them like it so yes good luck,,keep chasing it up

  • Thanks every one, I will keep on trying. Also our GP will help us if we hear nothing by the end of the week. I cant take a cancellation at the moment as my bosses go on holiday soon so myself and one other colleague are running things for a week and I cant clash with this. Hubby is doing so well and it is frustrating to be held back by technicalities.

  • Sadly the NHS is struggling with huge underfunding and we suffer. My Addenbrookes appointment is for July 15, that's 9 months after my ICH!

    What do you think to Addenbrookes? Have they been good?

    West Suffolk didn't scan me so I never got to Addenbrookes for treatment, it was too late to help me by the time they scanned.

  • Addenbrookes emergency treatment is second to none. One to one care in NCCU and HDU. We were looked after really well. Sadly when we were transferred to rehab ward a few cracks started to show, especially with communication. Having three consultants didn't help, neurosurgery, orthopaedics and rehab. Hubby was discharged to Ipswich with no advance warning one Friday, luckily we were visiting on the day otherwise we may not have been informed until that evening when Ipswich called to say he had landed safely.

    We are now waiting for what should have been a four week follow up which looks as though it will take much longer. Frustrating as back brace shouldn't be discontinued without their say so.

    I hope you find them good in your case, generally my feeling is that they are very good but getting too big. The smaller hospitals have a more friendly feel.

    I assume you are fairly local to us as you mention West Suffolk, so the worst thing will be the journey and parking,

    Good luck.....

  • Woo Hoo, Appointment has come through for 21st April. Today must be a lucky day...

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