What do you think is the most important support after leaving ICU?

[eddie1968]

It's been 3 years since discharge for me and I have made a full recovery. I would like to know what people would have thought the most important aspect of follow up care if they didn't receive any like I did.

Obviously in the first few weeks the physical aspects like strength and eating were important to me. I had Acute Respiratory Failure after surgery to reverse a colostomy I had in place for 3 years. I literally couldn't go anywhere for long due to sudden incontinence that took ages to get under control. A dietician might have proved useful too. I stayed home alone after ICU and fought hard to keep independent and didn't want to stay with family as I had did before following other surgeries. I had next to no appetite as well. I think about 2 months later I was still on the physical road to recovery but I could have done with help from a psychologist or support group like ICU steps. Anyone who has had prolonged and complicated ICU treatment needs a proper follow up care plan. The money should be in place rather than compounding the problem through no help as people take up probably more time and NHS money burdening their GPs with issues that should have been addressed. Any ideas folks. Thanks Edward

[Offcut]

I was in 2 ICU wards in 2 different hospitals over 32 days. I was in one for 12 days while on an Oscillator for 10 days But was in an induced coma, but they were the ones that did a follow up by explaining what they had done while there. Plus they took a photo of me with all my tubes etc. in my bed.

The other I was in ITU for 20 days plus 15 on the general ward and had no follow up at all.

My GP got me in touch with a dietician as I lost over 3 stone but it took 3 months and I was not given a full plan of action!

I have not recovered from my experience as hoped, I had 76% lung function in 2008 when I left but now I am 57% upright and lose a further 12% when flat. I am now getting recurring Lung and heart issues that are putting me in A&E. All I can get is "I now have to live with it?"

I do feel like they are keeping me going but not anything else!

Be Well

[Luckyone]

Hi Eddie,

I know a lot of hospitals still don't have a follow up clinic leaving so many people in a state of limbo having been through such a traumatic experience and then left with little or no support, I'm glad to say with the help of ICUsteps things are slowly beginning to change with the realization that many ex-patients and relatives need support long after discharge.

I was very lucky that one of my niece's is an ICU nurse in the hospital I was in, she gave me a lot of support during my stay and after discharge, even getting me an earlier follow up after 3 month (at the time it was six months) as she was very concerned that I wasn't coping very well after spending 3 months in ICU so critically ill it was thought I wouldn't survive.

Things have improved in the hospital I was in as I believe they now have a monthly follow up clinic and a psychologist attached to the ICU, I like to think I was part of that change doing talks to hospital staff about my experience in ICU and how life changing a critical illness can be, unfortunately my illness left me with badly scared lungs, "which for a non smoker is hard to take" this along with cognitive problems and nerve damage from severe sepsis, meaning my life will return to what it was.

I would like to see follow up and psychological help available to all ex-ICU patients as they spend so much time and money saving our lives only to leave the job half done, what's the point in saving us if we spend so many years trying to come to terms with what happened to us.

Unfortunately psychological counseling can be difficult to get on the NHS as it's very much a postcode lottery and the only alternative is to go private which can be very expensive.

ICUsteps local support groups can offer help in understanding what you have been through as they are run on a voluntary basis by HCP and ex-ICU patients and relatives that have been through it to so understand what you are going through. Details of local groups can be found at icusteps.org

[Kit10 in reply to Luckyone]

What support do I think people should get?

Physiotherapy

Full details of what happened to them while unconscious

Voice and breathing exercises to recover damage to voice

Exercises to recover swallowing if necessary

Whatever it takes to recover bladder and bowel function and control

Manicure, pedicure and a haircut, leg wax etc if that matters to them.

Trauma therapy and counselling

If religious, time to talk about nearly dying with someone who shares their beliefs

Dental checkup, eye checkup, hearing checkup, any other routine care missed during a long period of hospitalization (be very tactful if offering smear or prostate tests to anyone traumatised by catheterization and intimate personal care)

Good food, including prebiotics to restore gut bacteria after antibiotics.

Lots of good quiet sleep, lots of peaceful 'me time', lots of interesting stimulating things to do and think about., time outdoors for fresh air and sunlight, maybe vitamin D supplement to make up for extended time indoors

Lots of TLC (tender loving care)

Financial advice if relevant, and practical help to get their home fit to live in after being left unoccupied and to catch up with domestic admin and/or emotional support for family who've taken on extra tasks

Any other ideas anyone?