Isolated: Help please. My local hospital used to... - ICUsteps

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Isolated

Lacemaker profile image
8 Replies

Help please.

My local hospital used to have an icusteps support group.

In their wisdom they decided to stop being under the ' umbrella ' of icusteps. Thus there is now no support group to go to.

At some stage they say " when they have worked out the format " they will restart with drop-in sessions, but keep it " in house ". Apparently committee's frighten them.

My problem is? What can I and other survivor's in my area do now?

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Lacemaker profile image
Lacemaker
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8 Replies

Hi there,

Firstly, this is very upsetting news as it is similar to experiences I have had. I am interested and in the first stages of looking into support after ICU and what can be offered for people as trauma should not be dealt with alone.

Where abouts are you based?

Many thanks and I hope we can keep this conversation open and ongoing.

Kate x

BBDEBS profile image
BBDEBS

Luckyone can you help?

Lacemaker have you looked online for a support group near you? There are several around the country xx

Lacemaker profile image
Lacemaker in reply to BBDEBS

Luckyone is already aware of the problem as is ICUsteps. The nearest group to us have said that we were not welcome after one visit. Unfortunately they are under the same trust.

Lacemaker profile image
Lacemaker

A group to come under the umbrella of ICUsteps has to be run by both health professionals and ex-patients and relatives. My problem is that my hospital withdrew all medical support and basically closed the group down. If I was able to start a new group, I would have to find Health Professionals who were willing to come for free & were not linked to the local Trust.

Lacemaker profile image
Lacemaker

Tiaclydebonnie Thank you for your support & understanding.

ICUsteps-Peter profile image
ICUsteps-PeterPartnerICUsteps

Hello Lacemaker,

The news of this group's closure came as a disappointment, however, I've spoken to the hospital and having learning of the full circumstances I've been greatly reassured by the services that they have in place, which are already more comprehensive than most UK hospitals offer, and the plans for their future development.

As we've discussed previously, the greatest benefit of support groups is that they give patients who’ve not spoken to another ICU survivor since leave critical care the opportunity to meet others like them and finally realise they’re not alone in what they’ve experienced. Support groups are not the only means by which this can be achieved and indeed we've seen numbers at other groups drop as this need has been met through improved hospital rehabilitation services. Though it's a pity for the group members on a personal level, it's actually a positive that the patient need is being met earlier in their recovery.

I hope you can appreciate these points and take solace in knowing that patients will continue to receive support. The debt of gratitude we owe to critical care is something many survivors never feel they’re able to fully repay, but having been fortunate enough to be given a second chance at life, making the most of that second chance with our friends and family can repay the debt equally as well.

Your ongoing support for ICUsteps and your local hospital is greatly appreciated.

Best wishes,

Peter

Lacemaker profile image
Lacemaker

It would appear that I have inadvertently upset and caused concern among the community. Please believe me when I say that this was not done intentionally. All I wanted was an answer to what I thought was a simple question. HealthUnlocked is a brilliant way to help fellow survivor's of ICU, including myself, and the last thing I want to do is bring it into disrepute. So please accept my apologies for any hurt and upset I may have caused.

Thank you

Lacemaker

ferrent profile image
ferrent

Hi Lacemaker, this annoying especially as you buuld up trust with the people in your group but unfortunately for some reason they've had to disband your group in its present form. Have you checked with UK Sepsis Trust? They have several groups throughout the country.

Have you asked your ICU if they know of any other support group nearby? I hope you find a group, they are invaluable.

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