BBC News Today!: Many intensive care patients... - ICUsteps

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BBC News Today!

rachelsdad profile image
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Many intensive care patients suffer pain up to a year after leaving hospital, a study has suggested.

The research also found a quarter of the patients were dependent on help with washing and dressing, months after their discharge.

Almost 300 intensive care patients answered questions for the study, published in the journal Critical Care.

The Department of Health said it was "crucial" patients got the support they needed when they left hospital.

Continue reading the main story

Start Quote

There is often little or no support for these people once discharged from hospital.”

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Barry Williams

Intensive Care Society

Researchers from Imperial College London and Oxford University received questionnaires from 293 patients who had spent at least two days in intensive care at one of 22 hospitals around the UK.

Half were teaching hospitals - the remainder were district general hospitals.

Almost three-quarters of them (73%) reported having moderate or severe pain a year after discharge, while 44% were significantly anxious or depressed.

Two-thirds still had problems walking, six months after leaving hospital.

Much of the care was provided by family members.

The number of patients who said a job was their main source of income went from 19% before hospital admission to 11%.

And a third of all patients said there had been a negative impact on their family income six months after leaving hospital, with this figure only declining slightly at 12 months after discharge.

Physically weak

Barry Williams, a member of the Intensive Care Society's patient liaison committee and a former NHS chief executive, said: "There is often little or no support for these people once discharged from hospital.

"The Departments of Health and Work and Pensions should work with us to produce a policy which would deal with these problems."

Mr Williams got involved in the work after his wife, Kathy, spent 49 days in intensive care. She made a successful recovery.

He said: "Patients are physically weak after intensive care because of the length of time they have spent immobilised and sedated.

"They and their families need practical, short-term help - such as disabled parking badges or adaptations in the house - but this sort of support often isn't available until you've been ill or immobile for a year."

The researchers did not find any evidence that relationships broke down or people needed to move house.

However, they wrote in the paper: "Mortgage protection policies often protect against repossession for an initial 12-month period.

"And many home loan organisations allow repayment flexibility for a prolonged period after illness.

"The UK Building Society Association felt that one-year follow-up was too short a period to identify repossessions."

The study found a small number of patients had seen a health professional to talk about emotional problems - but more patients would have liked this support.

It is hoped that a bigger study can be carried out in the future.

A Department of Health spokesman said: "Leaving hospital can be a difficult time for patients and their families and sometimes, extra help is needed, over and above medical treatment to help ease people back into their usual way of life.

"It is absolutely crucial that the NHS and local authorities work together to help people leave hospital when they are ready and that patients get to go home with the support they and their families need."

He added that £859m had been "set aside" to encourage the NHS and social care to "develop new services that help people maintain their independence".

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rachelsdad profile image
rachelsdad
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Offcut profile image
Offcut

At last people are looking outside the ICU wards.

I have been involved in a number of studies for 2 years after my stay in ICU.

I do still have problems as a result of my illness and ICU affects. My wife and Two sons 31, 29 have been affected I am due to go back into hospital, they try not to show it but they are all worried for me.

Groups Like ICUSteps should be encouraged in every area.

rachelsdad profile image
rachelsdad in reply to Offcut

It was good to read today a bit of publicity on the subject.

I fully agree ICU STEPS will be encouraged in the work they do, you and i both have experienced it.

I am not a religous person but at times like you are going through it would be nice to think someone is looking out for you.I am sure they are!

Good luck and keep strong for the family.

Regards

Richard

ICUsteps-Peter profile image
ICUsteps-PeterPartnerICUsteps

Rachelsdad, thanks for posting about this so quickly. I didn't see it on BBC Breakfast but saw Dr.Brett's interview through the website. His study confirms what we all know to be true, but at least now there's evidence to support what we've all been preaching for years.

We received a contact from the BBC Radio London Vanessa Feltz show later in the morning and I was interviewed on air. The full programme can be heard here: bbc.co.uk/programmes/p001d7... (the intensive care section was between 1:00 and 1:30 on the show).

Luckyone profile image
Luckyone in reply to ICUsteps-Peter

Hi Peter,

I heard your interview on BBC radio London, thanks to your email, I thought you gave a very good account of what we all went through and without ICUsteps offering the support that both ex-patients and relatives need, there would be little or no help available, hopefully through this research the powers that be will listen and give the support that is needed.

rachelsdad profile image
rachelsdad in reply to ICUsteps-Peter

Hello Peter

Is that £859M to be set aside true?

Seems a lot of money to me,i wonder if is just a made up figure?

I was really pleased to read the article as i was waking up this morning as i commented to the BBC today it would seem you get 24/7 care whilst in Hospital but the second you are discharged it is 24/7 dont care!!

I know because i experienced it last year.

There is a link missing in the system that does need addressing.

Thank you for all your work with ICU STEPS, i and others do appreciate it!

Regards

Richard

ICUsteps-Peter profile image
ICUsteps-PeterPartnerICUsteps in reply to rachelsdad

Hi Richard,

I don't know about the financial commitments - it seems like a very specific amount to be made up, but what I do believe is that there needs to be a change in the way health professionals regard successful outcome from critical illness. It doesn't end on discharge from ICU or hospital. The job needs to be finished and return us from being patients back to being people again. I know I'm preaching to the choir - Like you said, when you experience it first hand, it's glaringly obvious.

We will continue to try and raise these issues and do what we can to make a difference. The community here is an increasingly important part of that. The patient voice is stronger than ever in the NHS and what we and those like us have to say is an important part of the debate.

Best wishes,

Peter

summerwine profile image
summerwine

When I left hospital aged 28 (only 5 months ago) I was utterly terrified. Recovering quite quickly I suppose but have to as got 3 children under 4 to look after, and I was establishing full time Breastfeeding. Husband had to go back to work as he already had 2 months compassionate leave and a month off using his holidays. The icu nurses were great in hospital but as soon as I've come home, no ones interested. Trying to make a relationship with my GP in case I have any concerns. But it's not specific for my needs. Saw a psychologist when I was in hospital but then appointments times were really inconvenient so seeing someone privately now. It's a lot to emotionally manage oneself with a family to look after and physically recovering too

ICUsteps-Peter profile image
ICUsteps-PeterPartnerICUsteps in reply to summerwine

Hi summerwine,

The findings of the report will not come as any surprise to those of us who have been through critical care. We must build on this and have it recognised that survival isn't enough. We need to be supported through our recovery, given rehabilitation and returned to health.

Getting recognition for this and systems in place is a painfully slow process but it is heading in the right direction.

Five months is still a relatively short time to have been out of ICU. I hope your recovery goes smoothly.

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