Rehabilitation After Critical Illness

What the Rehabilitation after Critical Illness Service does

The Rehab after Critical Illness team currently consists of Dr Carl Waldmann, Sister Melanie Gager, Senior Staff Nurse Sara Evans and Staff Nurse Helen Kieras. Time allocated for the nursing team is a total 37.5 hours per week in which we conduct all of the following.

Patient - inclusion criteria

Four days or more in ICU
Certain conditions e.g. epiglottitis, maternal cases
Referrals from other health professionals
Self-referral - word of mouth or from media coverage (e.g., radio, newspapers)

Ward visits

ICUOur aim is to visit patients on the ward every 1 to 2 weeks after discharge from ICU. Usually the first part of the visit is a physical assessment – for example, we look at tracheotomy sites, and ask about swallowing. We also discuss mobility with patients so we can assess the progress they are making (e.g. lifting arms off the bed, how far they are walking.) We also discuss diet and whether there are any changes to taste, which is common after being critically ill. We also talk about excessive hair loss, dry skin, and nail ridges, again all of which are common after a critical illness.

In this phase, we start to let patients and their relatives know some of the adverse thoughts and feelings the patient may be having are normal. In doing so, we hope to help patients realise that they are not the only ones having this type of experience. This should reduce any feelings of “going mad” and “being the only one” and should reduce feelings of shame or embarrassment the patient may have. We will ask questions that may surprise patients and relatives at first - for example, asking about concentration as not being able to concentrate is quite normal after critical illness.

We hope that patients will have been asked about hallucinations and bad dreams when they were on the ICU - however, we ask questions about this again during ward visits which may be done during visiting hours as it is also useful to meet relatives/visitors as well. We can explain any issues to them so that they have more understanding of what is happening to their loved one. This also makes them feel less powerless. It is also an opportunity for us to assess who may need more psychological input. It can act as a safety mechanism if someone is very distressed so further monitoring/interventions can be put in place.

We provide a booklet called “Life after Critical Illness” which covers both physical and psychological issues.

This is also a good opportunity to gather feedback on how care was on the ICU and whether anything could have been done differently. This has led to suggestions such as clocks in each bed space and slow-closing bins that are quieter. It acts as a way of obtaining feedback on the ICU. At this point in time feedback is mostly from the relatives.

Phone calls

Often patients are transferred for specialist treatment e.g. to John Radcliffe Neuro ICU. We contact these centre's to see how the patient is progressing whilst they are an inpatient.

Some patients are discharged for further rehabilitation (e.g. to Townlands Community Hospital) - again we contact these places to follow up on their progress.

Clinics

When the patient has been discharged home, or to their usual residence, we send out interest letters, asking the patient if they would be interested in coming back to clinic. If the patient responds positively we schedule an appointment for them. Patients are invited back to clinic at 2 to 3 months after discharge home. Relatives are also welcome to attend.

Before the patient comes into the clinic room they are asked to complete a Trauma Screening Questionnaire. This is a helpful guide for us about who may or may not need more psychological support. The first clinic is a needs assessment. Our consultant gets an idea of what the patient was like prior to their critical illness. The patients’ concerns are then discussed. It also acts as a safety net to check that the patient is being followed up by all the relevant medical and surgical teams. We write to the patient’s GP after clinic, to keep them informed with a copy of the letter being sent to the patient. In these letters we can suggest referrals to other specialists, including clinical psychologists for help with trauma and memory. We make referrals with the GP’s consent. We ask the patient at this time if they would like a 1:1 visit back to the ICU to go over their stay in detail. Again, this is also a chance for us to collect feedback relating to their experiences on the ICU and the hospital with the aim of improving the experience for everyone.

We invite the patient to attend another clinic appointment four months later. This is both a physical and psychological check. A third clinic appointment may be the last, though there is no time limit. We also have an open door policy so patients can either self-refer or be referred back to us at a later date; in some cases this has been years later. Overall, this also gives expert reassurance that the patient is progressing as would be expected.

We hope that in visiting people on wards and inviting them to clinic makes them aware that it is OK to ask for help after such a significant experience and that we can offer the support they need.

We recognize the impact of critical illness on the relatives as well as the patient. If a relative is having a particular problem we suggest Talking Therapies to them.

The ICU Support Network - Reading also offers support in a social setting from former patients and relatives with ICU healthcare professionals underpinning this service.

1:1 Visits

ICUPatients come back to the ICU to go over their critical care notes and to show them some of the equipment that has been used during their stay (e.g non-invasive masks, monitoring.) The visit is optional and feedback from our former patients suggests that this is one of most beneficial aspects of the service. Whilst this is planned in advance if they feel on the day that they are unable to visit we will re-schedule to a later date. The patient (and relative) are shown photographs of nurses and doctors who work on the ICU who looked after them. The patient may or may not remember them. Ground rules are set – if the patient wishes to stop, or if the nurse with the patient feels they are becoming too anxious the visit stops. Patients are warned it may make them think about their ICU stay more following the visit and to expect this.

The 1:1s are held in a (quieter) side room if possible. A “tour” around the ICU is then undertaken so they can see the layout, size etc. to see if that prompts any more memories. It allows the patient uninterrupted time to ask questions about their time in ICU - they may have some memories or none, and often people have “unreal” memories linked to hallucinations/dreams.

These visits provide corrective information - for example, the patient may have thought that nobody visited, and we can show them that their loved ones visited each day. It can also help correct some of the ideas about the equipment - e.g. non-invasive masks being seen as metal cages, when they are soft plastic. The patient should be able to bring this new information to their story, and adapt some of it to build in the new information. This can make it easier to deal with. Before the patient leaves, the nurse ensures that the patient has the contact details for the Rehab after Critical Illness team should they experience any increase in symptoms/emotional distress.

These visits are also therapeutic for staff as they see patients being well enough to come back to visit us; this is encouraging for all staff.

Diaries

Some patients find it helpful to have a diary of their stay in ICU. This is additional to any information given on the 1:1 visit and any information given by relatives. They are written using the critical care notes. It is not always possible to write these as quickly as we would like due our workload.

Helping Us

We are privileged to develop close therapeutic relationships with our patients and relatives. They often wish to pay back to us as well. Some patients now volunteer in ICU and occasionally within the hospital. Some volunteers visit patients on wards, and are involved in teaching staff about their experiences. Patients and relatives have also taken part in research leading to improved patient and relative experience. They also take part in events like the Reading Half-marathon, and many do other fund-raising events for us. We also have the ICU Support Network –Reading, a patient and relative support group which has an active volunteer committee made up of patients, relatives and staff.

Sara Evans (ICU Staff Nurse)

A nurses experience of working with the Rehabilitation After Critical Illness Team

Being part of the Rehabilitation After Critical Illness Team has been a very rewarding and inspiring experience. I was proud to witness how the team have supported our patients from ICU discharge on their long journey towards their recovery. It was very fulfilling as a nurse realising that all their hard work and support of the patients while they are still in the hospital and even years after they are discharged home makes a massive difference not only to their lives but also to those of their relatives as well.

I am especially honoured to be part of the ICU support group and able to see first hand how they support and touch other people’s lives.

I feel humbled and privileged to have worked with people who are so dedicated and passionate in what they do. As a nurse, this experience has taught me to see the “person” in every patient that I am caring for.

Lovely Sorianosos



Patient's Experience of the Rehabilitation after Critical Illness Service

ICUTwo years ago, I spent two weeks in the ICU, the first week during which I was unconscious. During the second week, it was like a dream, being vaguely aware of what was going on.

So to be invited back to the ICU some weeks later was a truly worthwhile experience as it allowed me to make some sense of what had happened to me. I wanted to fill in the gaps in my memory, to make sense of it all. I was shown my records on the computer and the staff answered my questions. This session helped me to better understand the events of those weeks.

Then I was given a tour of the ICU. During my stay, I had been disorientated and mystified about the layout of the ward, wondering where various doors led to. So my curiosity was satisfied!

I have chosen to attend a Rehab clinic at regular intervals, at which my progress is reviewed and I can raise any queries I may have. These appointments give me peace of mind as I know I am being well looked after!

JOHN CHILVERS (patient)




I am very happy to have the opportunity to tell you what a huge difference the team at RBH has made to my recovery. I had my operation at another hospital and the subsequent "psychosis?" was utterly dismissed as nonsense. I was left not only physically shaken but emotionally wrecked by the experience. It was through the Cardiac Nurse team that I was referred to the ICU Support Network where I found that my experience was not abnormal/I was not mad/neurotic/ a drama queen etc etc. With the patient, caring and personalised help I received from the team I was able to visit the ICU department, have the equipment explained, was able to read through my notes and have them explained, and was relieved to find that these people knew all about the horror of my post op. experience. I was offered calm and caring reassurance at each meeting. The opportunity to phone and talk was offered at all times. I cannot express in words adequate enough to describe the difference the team has made to me. I would say they saved my sanity. I no longer have nightmares and my confidence has returned 100% The ongoing meetings are a brilliant idea as I am able to meet with and talk to other patients who have had similar frightening experiences. I wish that similar teams were available across the country.

A massive thank you to a brilliant team.

JANE PARSLOE (patient)




Knowing that there is a dedicated Rehabilitation after Critical Illness Support Team available at the RBH was a major factor in aiding my recovery following discharge from ICU. Although I class myself as one of the lucky ones in that I did not seem to suffer many of the problems other patients encountered; knowing that the team were available to talk things through with at one of the routine clinic visits or even at the end of a ‘phone line should I have needed them was a great reassurance not just to myself but to my family.

Patients discharged from ICU following a period of critical illness often suffer psychological problems and feel isolated and unable speak about their problems for fear of people feeling they are ‘strange’. They therefore end up suffering in silence. Patients and their families are extremely lucky to have the benefit of the support team at the RBH as there is always a friendly ear who will listen and reassure. I cannot praise the follow-up team enough.

LYNNE JOHNSON (patient)




I was only an overnighter at RBH and now thrilled they followed up when my long stay was in a London hospital who had/have no such thing. I'd have never understood that what I experienced and continued to experience was not just me but affects others alike.

I've met people that genuinely understand what follows discharge and are always prepared to listen when loved ones are just relieved you're out of hospital and cannot see the psychological needs.

I have found more purpose to life, helping others as a Volunteer on the Unit. I never thought such a role be available.

I've made friends.

I was/can be referred to Services I knew nothing off and wonder if my GP would have been able to point me in the right direction.

I can understand mental ill health and first aid that little bit more - useful in my full time job.

SALLI WARD (patient)




A couple of years ago I suddenly became very ill will general blood poisoning and multiple organ failure. I was unaware of the problem as I was unconscious during the worst of it.

What is enormously valuable and a great comfort is to know that charming and skilled help from the Follow up team is available at a moment’s notice. I have attended the three set interviews.

I think the greatest value of the ICU Support team lies in its very existence and it has been a great support to me in the manner of a life boat on a ship which you only want when you really need it. Every now and again I feel stressed and bit poorly (!) and it is a wonderful feeling to know that there is the skilled ICU Network ready to help. The very existence of the ICU Network strengthens my mental state even if I have never contacted them—so far.

MICHAEL EUSTACE (patient)




The role of the Rehabilitation after Critical Illness Support Team cannot be underestimated in the outstanding support it gives to patients and relatives following a stay in ICU.

Probably the biggest problem an ex patient suffers are the numerous questions and blanks they have from their stay in ICU, the Team can help you understand most of the issues and gaps where possible and are always there to help if problems occur in the future. The best thing for me personally attending the Follow up Clinic for the first time was that they gave me a chance to visit the unit and thank as many of the staff who had cared for me and saved my life, it was an incredible feeling.

The Team also provides the opportunity for individuals to give something back, which to me was vitally important. I have taken part in research, talks, become a patient Representative on various committees, which in a small way, I hope by sharing my experiences of ICU can be used to further care for future ICU patients.

I have even dragged my sorry arse around the Reading half Marathon to raise money for the unit, a cause that I live and breathe for each day, because literally without the ICU staff there would be no living let alone breathing.

Matt Wiltshire (patient)




The value of the Rehabilitation after Critical Illness team (RaCI) attached to an Intensive Care Unit is difficult to quantify but one thing is for certain, an ongoing need is there. A lack of follow up of a patient after discharge from Intensive Care from both Hospitals and General Practitioners can result in an increased need to utilise other NHS scarce resources such as Clinical Psychologists’ and Traumatic Stress Support Services.

The length of time spent in Intensive Care is not a good indicator of the level of support needed as those patients whose stay is just a few days are often affected as much as those whose stay extends into weeks or months. The relatives/carers of patients should also be taken in account when considering the overall need for ongoing support.

My story

Within a few days of being admitted to the Royal Berkshire Hospital I was diagnosed with Guillain- Barre Syndrome which caused severe paralysis. I spent four month in hospital, one of which was in Intensive Care. During my stay in Intensive Care I can only remember having a tracheostomy, an operation for a perforated ceacum and suffering extremely disturbing hallucination. I was totally unaware of the SVT arrest, peritonitis, sepsis and pneumonia

Before being discharged to a general ward, the reduction in the level of nursing care from one to one to something in the region of eight or ten to one was explained in full; this triggered a feeling of insecurity, not only for myself as the patient but also for my relatives. My relatives had a greater feeling of insecurity as they had supported me through the severe effects of my illness, some of which, as a patient I was totally unaware of. The feeling of insecurity was eased by the knowledge that the RaCI team on the Unit would be monitoring my progress and would visit if there was a possibility of a relapse or if not, every one or two weeks.

The physiotherapists attended me on my first morning in the general ward; they helped me to stand and asked me to walk a few steps so my fitness could be assessed. I could not move; I sat down and was told to bring my legs on to the bed; this could only be done after my slippers had been removed. It was at this point I became aware for the first time that I had been critically ill. With the hallucinations I had suffered still very clear in my mind (where they would remain for many years to come), and my physical weakness a feeling of insecurity began to take hold and with it the trauma surrounding my time in Intensive Care began to develop. Over the coming months the development of trauma was not helped by a number of issues:


  • Difficulty in controlling my emotions
  • Family not wanting to talk about my time in Intensive Care (they felt that once discharged this episode in our life's was best forgotten)
  • What was a realistic expectation of my eventual level of fitness
  • The institutionalisation caused by a four month stay in hospital (on my second day home I complained that my bed was not being changed)!
  • The realisation of the exceptional efforts of the staff in Intensive Care had made on my behalf and also what I must have put my relatives through began to sink in
  • Change in attitude to life (sometimes 'sod it' sometimes 'aggressive')

The programme developed by the RaCI team at Royal Berks went a long way to alleviating the trauma that developed. Support from the team was and still is available to me and my relatives 24/7. The one to one visit back on the ward was a good starting point for me. I was able to see the equipment used during my stay in the Unit and reasons for its use were explained. The visit also gave me an opportunity to fill in the gaps in my time spent in Unit. The three visits to the RaCI clinic allowed me and my wife to discuss any problems that had developed since my discharge and any ongoing concerns about my treatment and its possible long term effects. A day to day account of my stay was provided in the form of a Diary. From this I was able to assess the amazing level of care that contributed to my eventual recovery and also what my family had been subjected to. To me this was and still is an extremely important record and allowed me to bring everything about my stay into perspective.

In retrospect the one thing I should have done at the time was to be completely open about the effect the trauma was having. Hiding it from those who were there to help only prolonged the feeling of isolation and with it the healing process. It can be difficult to admit those things that we perceive as a weakness within us.

Having been fortunate enough to become involved in the creation and running of the ICU Support Network – Reading which complements the work of the RaCI team I am only too aware of the ongoing need to support those, like myself and my relatives, who have experienced a stay in Intensive Care.

Gordon Sturmey (patient)



The Physiotherapy Team

Who?

We are a team of 4 physiotherapists and 1 assistant therapist who treat all patients on ICU. Our treatment sessions focus on function and movement to maximise a patient’s potential. Physiotherapy is accessible throughout the hospital, in all areas of care e.g. respiratory, rehabilitation, neurology, musculoskeletal and manual handling.

Why?

Physiotherapy on ICU covers two main areas: respiratory function and rehabilitation.

Our aim is to optimise cardiopulmonary function to promote secretion clearance, improve lung volume and to facilitate weaning from the ventilators. We use a variety of techniques to achieve this including positioning, breathing exercises, manual techniques, suctioning and early mobility.

Our other, and more recognised, input involves safe and early rehabilitation of patients using specialist equipment. We work to counter-act the effects of immobility through increasing joint range of motion and muscle strength. All patients are encouraged to sit out of bed, once deemed safe by one of the therapy staff, to restore strength, exercise tolerance, improve psychological well-being and to aid restoration of pre-morbid quality of life.

How?

We use a variety of specialist equipment to ensure safe and effective rehab. Physiotherapy often begins before the patient is awake with a therapist completing passive bed exercises or using a bike (that fits over the end of the bed) to prevent joint stiffness and to aid blood flow around the body. As the patient gets more awake the team will look to get the patient out of bed, often using a hoist, into a specialist supportive wheelchair. Rehab is then used to progress transfers out of bed, continue to increase muscle strength to aid walking, and work to restore function. We also use a structured bed and chair exercise programme for the patients to complete independently, with therapists and with relatives. The types of equipment we use are shown below:

Physio Equipment

After ICU?

Physiotherapy continues onto the wards too (you can’t get rid of us that easily!). On transfer from ICU one of our team will provide a verbal and documented handover to the ward therapist regarding rehab needs, current level of function and goals previously set. Once on the ward the physiotherapist will continue to progress the patient’s mobility and function, aiming to restore pre-morbid baseline. On discharge further rehabilitation is available either at a community hospital or in the home environment if deemed necessary.

For more details click here to download ICU's Rehabilitation Program

Alice Burney - ICU/Surgery Physiotherapist