Patients experience of temporary tracheostomy following microvascular

reconstruction for head and neck malignancy

Rogers SN a,b, Russell Lb, Lowe D a,b

Professor Simon N Rogers, FDS RCS FRCS MD, Evidence-Based Practice Research

Centre (EPRC), Faculty of Health and Social Care, Edge Hill University, St Helens Road,

Ormskirk, L39 4QP a and Consultant Regional Maxillofacial Unit, University Hospital

Aintree, Liverpool, L9 1AE, UK b. snrogers.aintree@gmail.com

Mr Luke Russell BDS Core Dental Trainee, Regional Maxillofacial Unit, University

Hospital Aintree, Liverpool, L9 1AE, UK b. lukeerussell@googlemail.com

Professor Derek Lowe, MSc C.Stat Medical Statistician, Evidence-Based Practice

Research Centre (EPRC), Faculty of Health, Edge Hill University, St Helens Road,

Ormskirk, L39 4QP a and Regional Maxillofacial Unit, University Hospital Aintree,

Liverpool, L9 1AE, UK b. astraglobeltd@btconnect.com

This clinical outcomes study was part funded by the Head and Neck Cancer (HaNC)

Patient and Carer Research Forum based at Aintree University Hospital. The paper has not

been submitted to another journal or presented at any meeting. The study approved by the

Clinical Audit Department at Aintree University Hospital. There is no conflict of interest.

Address for correspondence: Professor Simon N Rogers, FDS RCS FRCS MD,

Consultant Regional Maxillofacial Unit, University Hospital Aintree, Liverpool, L9 1AE,

UK. snrogers.aintree@gmail.com

Keywords

Tracheostomy; Head and neck cancer; Reconstruction; Patient experience

1

Abstract

A temporary tracheostomy (TT) is a commonly performed procedure as part of major

reconstructive surgery following tumour ablation for advanced oral cancer. The

tracheostomy provides easy access to a secure airway in case of haematoma or return to

theatre. Although a relatively simple addition to the operation there is a lack of information

on patients’ experience of a TT. The study involved three stages. Firstly semi-structured

interviews to identify items related to functional, emotional and social impacts of the

tracheostomy, on the ward and on removal. Secondly to use the items to develop a short

one-page questionnaire in collaboration with the Patient and Carer Support Group and

Research Forum. Thirdly a cross-sectional postal survey of patients having had a TT as

part of free tissue reconstruction between January 2013 and July 2015. The general

observation drawn from the interviews was that the TT was a negative experience, notably

fears, specifically a fear of chocking and communication difficulties. In the cross-sectional

survey a majority (60%) of responders stated that they would 'very much' avoid a

tracheostomy if at all possible. The main problem was with fear and communication;

however a substantial minority, between one-third and one-half either stated 'very much' or

'quite a bit' of a problem in regard to choking, discomfort, attracting attention, sleeping and

general management (other than the suctioning). This feedback should form part of patient

information, allow reflection on optimal peri-operative care and help inform the debate

around selection criteria for TT.

2

Introduction

There is variation in the early postoperative management of head and neck free flaps in the

UK. In a national postal survey of maxillofacial surgical units in the UK, 69 % of clinical

units (39/57) electively performed a tracheostomy ‘usually’ or ‘almost always’ after free flap

head and neck reconstructive surgery (Marsh 2009). 1 The relatively low complication rates

with tracheostomy (Castling 1994 Halfpenny 2000 ) 2,3 is balanced against the risk of

potentially life-threatening acute airway compromise post-operatively and the difficulties of

emergency intubation (Mishra 2005). 4 The morbidity of a temporary tracheostomy are well

recognised and include chest infection, haemorrhage, tube displacement, detailed removal

with longer length of stay, and tracheal stenosis. Some units avoid a temporary tracheostomy

(Crosher 1997 Coyle MJ,) 5,6 and on an individual basis perform immediate post-operative

extubation or overnight intubation Coyle MJ. 7 There is debate as to whether these patients

are best managed on a high dependency bed or intensive care unit. 8 Mathew SA

In our unit the majority of patients having free tissue reconstruction following oral and

oropharyngeal cancer resection routinely have a temporary tracheostomy and the Björk flap

technique is standard practice. This technique can be safely used in head and neck cancer

surgery in adults (Malata 1996). 9

Although considered a comparatively simple additional surgical procedure the Patient and

Carer Support Group of Aintree University Hospital expressed concerns about the impact the

tracheostomy has on patients post-operative experience. They argued that some patients have

found this procedure to be very distressing and that sometimes the clinical team fail to fully

appreciate this. In the literature there is a lack of patient reported outcomes related to

temporary tracheostomy, Astrachan and colleagues (1988) 10 reported the views of 60

critical-care nurses whose opinion was that compared to prolonged endotracheal intubation,

tracheostomy offers significant practical and psychological benefits compared to prolonged

endotracheal intubation. In the absence of any report of adult patients experience of

temporary tracheostomy (TT), the aim of this study was to identify patient concerns when

managing TT post-operatively, thereby leading to a better understanding of patient perception

and improved quality of care and patient experience.

3

Materials and Methods

The study comprised three stages - item content generation, questionnaire design and patient

survey.

Stage 1 involved interviewing patients who had had a temporary tracheostomy at the

Maxillofacial unit at Aintree Hospital. The interview was structured so as to ask patients to

describe their early experiences (first 24 hours) in terms of functional, emotional and social

impacts of the tracheostomy, on the ward and on removal. A total of 22 patients were

approached with 15 being interviewed by a trials nurse between mid-August and mid-

December 2014.

Stage 2 was to design a short one-page questionnaire based on the feedback from step one

and to adopt a Likert-type four-response option scale (Not at all, A little, Quite a bit, Very

much) for each question. The initial drafting was by the authors, in conjunction with the trials

Nurse and Head and Neck Clinical Nurse Specialists. The questionnaire was then refined

through discussion with the Patient and Carer Support Group, in particular to structure the

wording appropriately to accommodate postal surveying. There was a small pilot on six ward

patients, with no changes required.

Stage 3 was a postal survey, mailed out in July 2015. The University Hospital Aintree theatre

database was used to identify patients having had a free flap treated in the Maxillofacial Unit

between January 2013 and July 2015. Clinical details were collected via the hospital patient

records system and those alive were sent a questionnaire. A postal reminder was sent after 4

weeks. Any current inpatients at the time the survey was conducted were also included.

The study was approved by the Clinical Audit Department at Aintree University Hospital.

Results

The 15 stage 1 interviews generated a wealth of qualitative data and the summary extracts

within Table 1 are intended to convey the breadth of content and depth of feelings conveyed.

The key general observation was of fears associated with tracheostomy, and specifically a

4

fear of choking. Nursing care was generally regarded as being good but the way the

tracheostomy had been explained to patients in advance of the procedure was not good

enough. The tracheostomy caused problems in terms of disempowerment, isolation and

communication. This information stimulated the development of the one page tracheostomy

experience questionnaire.

There was a total of 181 patients identified as having had a free flap treated in the

Maxillofacial Unit between January 2013 and July 2015. Of these 37 were believed to have

died by July 2015, 5 were receiving palliative care/ had a recurrence of their primary

tumour/under other active treatment, 6 were pilot cases and 8 were lost to follow-up at

Aintree University Hospital. The survey population thus comprised 125 patients and the

survey response was 69% (86/125), which did not vary noticeably by gender (70% 51/73

male, 67% 35/52 female), nor by type of flap (68% 54/80 soft, 71% 32/45 composite) or time

between tracheostomy and survey (67% 38/57 for <12months, 76% 34/45 for 12-23 months,

61% 14/23 for ≥24 months), but was lower for younger patients at tracheostomy (55% 22/40

for <55 yrs, 68% 25/37 for 55-64 yrs, 81% 39/48, p=0.03). 86 responders comprised 59%

(51) males and 41% (35) females, with median (IQR) age of 62 (55-71) years, with 63% (54)

having had a soft free-flap (40 radial, 11 anterolateral thigh, 2 Latissimus dorsi, 1 rectus

abdominus) and 37% (32) a composite free-flap (12 fibula, 11 DCIA, 6 scapula, 3 composite

radial). Median (IQR) time from tracheostomy to survey response was 14 (7-22) months.

The overall response to the tracheostomy questionnaire is summarised in Table 2. A majority

(60%) of responders stated that they would 'very much' avoid a tracheostomy if at all

possible; 59% overall stated that speech was 'very much' a problem and 44% overall that

communication 'very much' was difficult with their trachy in place. A substantial minority,

between one-third and one-half either stated 'very much' or 'quite a bit' in regard to choking,

discomfort, attracting attention, sleeping and general management (other than the suctioning)

being problem issues. Likewise between one-third and one-half stated 'not at all' or 'a little' in

regard to feeling safe while their trachy was in place, in terms of getting sufficient

information about the trachy before the operation and in terms of getting enough help with

managing the trachy after the operation. One in seven (14%) were 'quite a bit' or 'very much'

reluctant for removal of their trachy. Patients were also asked how long their trachy remained

in place, with 53% (41/78) less than 7 days and 47% (37/78) for 7 or more days, not known

for 8.

5

The percentage of responders stating the worst two response options was analysed by clinical

factors (Table 3). Females tended to report a worse experience across the questionnaire, as

did those under 65 years and those with their trachy in place for less than 7 days. Female

patients tended to be older (60% were ≥65 years, compared with 35% of males) and there

was little difference between males and females or by age group in having the trachy in place

for <7 days (45% females, 49% males, 50% <65 years, 44% ≥65 years).

At the end of the questionnaire there was an open-ended free-text question that asked patients

to share any other impacts of their tracheostomy that they felt we should know about.

Responses came from 26 patients and a selection of these are shown in Table 4.

Discussion

The purpose of this project was to gain insight into the patients’ perspective of having a

temporary tracheostomy. To our knowledge this has never been reported previously. There

was no validated questionnaire available in the literature, so the first step was to design a

suitable measure that addressed the functional, emotional and social impacts of the TT and its

removal. Although open interviews with patients were used for item generation and the

Support Group assisted in the final questionnaire, it is accepted the questionnaire

development was study specific. It would benefit from further validation if it were to be used

more widely. The questionnaire was designed to be brief as the intention was always to use it

in a postal survey. The questionnaire has not been used in conjunction with other HRQOL

questionnaires as the focus has been on patient experiences of a TT. The postal survey had a

reasonable sample size and the response rate of 69% is acceptable enough for tentative

conclusions to be drawn.

The first stage of the project was questionnaire item generation and although this only

involved 15 patients, the uniformity of negative impact of the TT was obvious and this was

supported subsequently by the survey finding that 72% would avoid a trachy quite a bit or

very much if at all possible. The survey demonstrated that communication is a big problem

and this seems to lead to fear and vulnerability. There are possible gender differences with

females more likely for example to report not feeling safe while the TT was in place.

6

Naturally it would be reasonable to think that the shorter the time the TT is in the better,

however even with a TT less than 7 days compared to longer, there are significant problems

with discomfort, being around visitors, sleeping and managing the trachy.

In discussion with patients this study raises several issues. Patients have asked for more

information in preparation for their TT. In addition to a patient information leaflet they would

like more discussion around what to expect with a tracheostomy in place. They suggested

including a tracheostomy tube and manikin in the pre-treatment multi-professional

assessment clinic. Also they would appreciate pre-operative instruction around self-

management so they can better look after themselves after their TT. The patients find

communication difficult with a TT in place. Additional resources to aid communication

would be helpful such as boogie boards and other communication aid devices. The patients

felt quite vulnerable with a TT and asked that consideration be given to a designated

tracheostomy nurse on the ward and also to extended training across all ward staff to help

deal with tracheostomy issues. In addition patients have asked that the TT be removed as

soon as possible. The negative experience of patients would support the adoption of a risk

stratification for the use of TT. This could be by individualised patient selection taking into

account factors such as site and extent of resection, comorbidity, and grade of intubation.

Scoring systems are being devised to help in patient selection (Cameron 2009, Lee 2015). 11,12 It will be interesting in the future to compare patient experiences in those with and

without TT.

In conclusion, there is a balance between patient negative experience of a TT and the risk of

potential life threating airway compromise. The findings of this study would support

individualised patient care and targeted use of tracheostomies. Not all patients undergoing

free flap surgery require TT and further research on how to select patients for tracheostomy is

necessary. Certainly from a patient’s perspective a temporary tracheostomy is not considered

a 'minor' and routine procedure.

Conflict of interest statement

We have no conflicts of interest.

Ethics statement/confirmation of patient’s permission

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The data, which had been collected as part of a service audit rather than for research, met the

criteria of the local Clinical Governance Department for service evaluation.

Acknowledgements

We would like to that the Head and Neck Cancer Patient and Carer Research Forum based at

the Regional Surgical Centre, for initiating this area of investigation and providing financial

support. Also the Aintree Research and Development Department for providing trails nurse

time.

References

1.Marsh M, Elliot S, Anand R, Brennan PA. Early Post operative care for free flap head and

neck reconstructive surgery a national survey of practice. Br J Oral Maxillofac Surg

2009;47:182-185.

2.Castling B, Telfer M, Avery BS. Complications of tracheostomy in major head and neck

cancer surgery: a retrospective study of 60 consecutive cases. Br J Oral Maxillofac Surg

1994;32:3-5.

3.Halfpenny W, McGurk M. Analysis of tracheostomy-associated morbidity after operations

for head and neck cancer. Br J Oral Maxillofac Surg 2000;38:509-512.

4.Mishra S, Bhatnagar S, Jha RR, Singhal AK. Airway management of patients undergoing

oral cancer surgery: a retrospective study. Eur J Anaesthesiol. 2005;7:510-4.

5.Crosher R, Baldie C, Mitchell R. Selective use of tracheostomy in surgery for head and

neck cancer: an audit. Br J Oral Maxillofac Surg 1997;35:43-5.

6.Coyle MJ, Shrimpton A, Perkins C, et al. First do no harm : should routine tracheostomy

after oral and maxillofacial oncological operations be abandoned? Br J Oral Maxillofac Surg

2012;50:732-735.

8

7.Coyle MJ, Tyrrell R, Godden A, Hughes CW, Perkins C, Thomas S, Godden D. Replacing

tracheostomy with overnight intubation to manage the airway in head and neck oncology

patients: towards an improved recovery. Br J Oral Maxillofac Surg 2013;51:493-6.

8.Mathew SA, Senthilnathan P, Narayanan V. Management of post operative maxillofacial

oncology patients without the routine use of an intensive care unit. J Oral Maxillofac Surg

2010;9:329-333.

9.Malata CM, Foo IT, Simpson KH, Batchelor AG. An audit of Björk flap tracheostomies in

head and neck plastic surgery. Br J Oral Maxillofac Surg 1996 Feb;34:42-6.

10.Astrachan DI, Kirchner JC, Goodwin WJ Jr. Prolonged intubation vs. tracheotomy:

complications, practical and psychological considerations. Laryngoscope 1988 Nov;98:1165-

9.

11.Cameron M, Corner A, Diba A, Hankins M. Development of a tracheostomy scoring

system to guide airway management after major head and neck surgery. Int J Oral Maxillofac

Surg 2009;38:846-849.

12.Lee HJ, Kim JW, Choi SY, Kim CS, Kwon TG, Paeng JY The evaluation of a scoring

system in airway management after oral cancer surgery. Maxillofac Plast Reconstr Surg

2015;37:19.

9

Table 1. A selection of patient comment obtained from 15 patient interviewees about their experiences with a temporary tracheostomy

Patient Patient comment1 I found I was always in fear of choking and so found sleep very hard and uncomfortable.

2 Main problems were with the physical issues specifically uncomfortable but I knew it was necessary, removal of the tracheostomy tube was easy and relief.

3 Frightening, terrifying, very stressful, caused quite a lot of pain, tried to remove it but had to leave it, was on oxygen overnight, not being able to breathe, sucking out debris bothered me, still very sore, wanted to ask but was frightened.

4 I know what I was getting myself into but when I woke it was like leading into a black tunnel and then horrific pain to which very much of my surprise someone was there to relieve it. I thought that hygiene was first and foremost and also I was still in agony when awake.

5 I had major surgery twice this has left me with facial and neck scars plus a large and very deep tracheostomy scar. As a young person this has been and still is very hard to live with, people look and make comments. Once I woke with the tracheostomy tube I was worried it would block. It is only now that the scars are so awful and what the public do and say that bothers me.

6 Waking up with one fitted was a terrifying experience, the noise, and the feeling of not being able to get my breath is something I still don’t like thinking about. Whilst I was told before the operation I would have one fitted I was not prepared for the reality of it. Did not understand what was happening. I didn’t cope well with it at all whilst I was on the Ward.

7 I was aware I was going to regain consciousness with a tracheostomy but was not greatly worried about it. My major concern was the surgery on my tongue which was the focus of cure. The reality was that the tracheostomy was the worst thing of all of the invasive procedures carried out on me. On waking there was mild coughing and eventually this stopped and I learnt to breathe from the top of my lungs by inter-costal movements rather than diaphragmatic breathing. I was consciously aware of dirt, cold dry air entering my lungs. Healing was very slow taking six weeks to heal with dressing changes during the day which I was able to do, this impaired my speech as I had to learn to structure sentences, change breathing patterns and spoke much like a darlek. As the tracheostomy closed I then had to relearn sentence structure, word flow and emphasis and still tripped myself up with speech.

8 Immediately coming around from operation quite relaxed due to drugs. Later on the mucous building up on the chest, couldn’t breathe, felt like drowning, induced panic, lying down immobilised does not help this, very drowsy initially know social problems. On the ward there was a sense of drowning and panicking feeling continued throughout time of having the tracheostomy in. The most distressing part of the whole operation was the tracheostomy, horrible sensation that seemed to add to the trauma of the whole experience. I had my tube in for four to five days.

9 I had prepared myself with pen and paper to communicate. I was OK with it emotionally but my friends were very shocked and upset as they were not prepared for the visual reality by the ward staff. I was frustrated not being able to speak until the tube was changed to a variety where speech was possible. I was nervous about catching it on something and the thing coming out with my movements so they were very tentative. Information about how it might feel immediately post op and a more accurate expectation about the length of time would have helped. Perhaps viewing some photographs pre-op and explained about the different types of tubes and how they affect speech would help.

10 Waking with the tracheostomy I was surprised and it hit me emotionally as I don’t think I was told previously, I couldn’t speak, I found it difficult attracting attention, much later shown how to use it felt easier and more in control. After struggling for some time with communication with a pen and pad, told to stop the opening to be able to speak. My five year old daughter didn’t recognise me until I was able to speak. Removing the tracheostomy was a very happy day. The most difficult was the feeling of choking, the inability to get urgent attention to suck clean the tube otherwise the communications issues were secondary.

11 Horrendous I used to be a nurse with children and you don’t realise what it is like I would sooner be dead than go through it again. It is horrible, fearful, horrendous feeling especially when coughing and sucking down the tracheostomy. It was difficult to get a comfortable position getting the oxygen, alright when removed over quite quickly. You don’t know what it is like unless you have had it done. The feeling of sucking out was awful.

12 It felt funny and strange so so scary, I knew it was going to be there if I hadn’t known it may have been very different and even more frightening, because I knew it was going to be there it was not so frightening. It was impossible to speak and had to write everything down. I felt very lonely, felt left out because I could not form a conversation, when you are a patient you chat to one another, once removed I didn’t stop talking it has healed healthily and feels alright.

13 The enormous vulnerability especially when the nursing staff were making decisions for me and I couldn’t control them eg asking questions I couldn’t answer, choice not understanding I need to communicate by writing at least. Powerless not able to negotiate. Inability to be understood.

14 Not being able to communicate. Impacted on me socially, can’t interact the same, tracheostomy in four days, beforehand you didn’t realise how emotional it was. The big thing was when I woke up they tell you about it but not how bad it is. They say that you get used to it but I don’t think you do. The thought of having another one I would sooner go. I wouldn’t do it again, not sure what the alternative would be apart from death.

15 My only response “horrible”

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Table 2. Overall response to tracheostomy experience survey by 86 patients

Not at all A little Quite

a bitVery much

Missing

% Not at all/ A little*

% Not at all*

1. Did you get sufficient information about the trachy prior to your operation? 10 27 29 20 - 43% 12%9. Did you feel safe while the trachy was in? 9 26 18 31 2 42% 11%15. Did you get enough help about managing the trachy after your operation 10 19 33 21 3 35% 12%

Not at all A little Quite

a bitVery much

Missing

% Quite a bit/ Very much*

% Very much*

2. Did you have difficulty breathing while the trachy was in place? 33 38 6 9 - 17% 10%3. Did you find yourself choking or have the feeling of choking? 33 24 15 13 1 33% 15%4. Did you experience the feeling of suffocation? 52 18 11 4 1 18% 5%5. Did you experience any discomfort with the trachy? 15 41 17 13 - 35% 15%6. Was communication with others difficult while the trachy was in? 6 26 16 37 1 62% 44%7. Did you find it difficult to attract attention? 29 24 16 16 1 38% 19%8. Was it a problem being around your family/carers? 40 30 8 6 2 17% 7%10. Was sleeping difficult while the trachy was in place? 21 29 16 19 1 41% 22%11. Was social isolation a problem with the trachy? 34 24 10 15 3 30% 18%12. Was speech a problem with the trachy? 3 12 20 50 1 82% 59%13. Would you avoid a trachy if at all possible 16 7 10 49 4 72% 60%14. Was managing the trachy difficult (as opposed to just the suctioning bit) 17 37 19 11 2 36% 13%16. Was your mobility restricted specifically because of the trachy? 45 21 7 11 2 21% 13%17. Were you reluctant to get the trachy removed? 68 4 3 9 2 14% 11%

*excludes missing data

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Table 3. Response to tracheostomy experience survey by gender, age, type of free-flap and time from tracheostomy.

The Table displays % of column totals, excluding any missing response data.

Gender Age at tracheostomy Flap type Time from

Tracheostomy to surveyTime trachy was in

placeMalen=51

Femalen=35

<65n=47

≥65n=39

Softn=54

Compositen=32

<12 monthsn=38

≥12 monthsn=48

< 7 daysn=41

≥7 daysn=37

% 'Not at all' / 'A little'1. Did you get sufficient information about the trachy prior to your operation? 39 49 45 41 39 50 32 52 46 439. Did you feel safe while the trachy was in? 31 57 38 46 42 42 37 46 54 3515. Did you get enough help about managing the trachy after your operation 32 39 40 29 36 33 26 42 32 41

% 'Quite a bit' / 'Very much'2. Did you have difficulty breathing while the trachy was in place? 16 20 26 8 11 28 21 15 24 113. Did you find yourself choking or have the feeling of choking? 25 44 43 21 34 31 39 28 39 284. Did you experience the feeling of suffocation? 12 26 22 13 11 28 22 15 22 145. Did you experience any discomfort with the trachy? 29 43 40 28 28 48 39 31 51 196. Was communication with others difficult while the trachy was in? 56 71 65 59 69 52 53 70 63 657. Did you find it difficult to attract attention? 32 46 37 38 28 54 29 45 33 418. Was it a problem being around your family/carers? 12 23 13 21 17 16 11 21 23 510. Was sleeping difficult while the trachy was in place? 38 46 48 33 44 35 45 38 58 3211. Was social isolation a problem with the trachy? 22 41 28 32 25 39 21 38 26 3212. Was speech a problem with the trachy? 76 91 78 87 85 77 76 87 85 8613. Would you avoid a trachy if at all possible 69 76 76 67 69 77 72 72 81 6514. Was managing the trachy difficult (as opposed to just the suctioning bit) 34 38 37 34 33 40 32 38 50 2216. Was your mobility restricted specifically because of the trachy? 18 26 26 16 20 23 24 20 26 1917. Were you reluctant to get the trachy removed? 14 14 18 10 11 20 22 9 10 14

Shaded 0.01<p<0.05, Shaded p<0.01; Fishers Exact test

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Table 4. A selection of Free-text response received as to other impacts of their tracheostomy they felt we should know about.

1st time scared when suctioning (fear of unknown) next couple got easier Blocked once but was attended to very quickly. It was a very unpleasant feeling Can't remember how many days trachy was in I am guessing 3 weeks. Apparently I ripped mine out after operation. I don't

really think it was that bad after I was in main ward. Changing it was horrific. I was petrified, felt I could not breath. Taking it out was easier than I expected and was quick.

Despite the discomfort mainly due to very tight stitches I realised the procedure was inherent in my recovery so tried to work with it. Once tapes had replaced the sutures it was completely comfortable apart from when I had to use the suction pipe. Healing was prompt apart form site of stitches which cause sores on the thin skinned area on my collar bone and these were worsened during radiotherapy. Overall I think that had the trachy not been so tightly secured the whole episode would have been made more comfortable.

I did not actually have to manage the trachy myself apart from not getting it wet I had worries about my own suctioning while in hospital. I would have felt better as the worse feeling was choking and panic! Felt awful if had to call for nurses to do the suction more than once a night.

Healing took much longer than I anticipated. Good care was given by the community nurse in dressings. I believe I pulled the tracheostomy out and didn't need it again! I found the frame very tight and the removal of the frame was very painful and would benefit from some kind of pain relief. I had a horrific experience one night, when my trachy got blocked up and I could not breath, I had to throw a bottle at the

door to get attention from someone to help me! I have had the trachy twice now on 2 major operations. I have to say it was the worst part and it frightened the life out of me.

Suction blocking is the worst part. Also the built in heater was so uncomfortable. I think this survey is such a good idea. Thank you for doing this.

I only had a trachy in place for a few hours as I vomited and it dislodged and had it removed whilst in ITU. I was not aware of some of the side effects which resulted from having a tracheostomy, therefore I did not cope too well.

Suctioning and lack of speech were not explained to me. However I coped and soon learned the hard way, by experiencing these problems.

It has been 22 months since this procedure but can honestly say I had no fear or side or ill effects. It is a necessary evil, you have to endure to get to a better place but boy it feels so good when it is taken out the feeling of

complete euphoria. Less than was expected. People that have had a trachy previously say to me that I can't believe I have had one - hardly any

scar mark I did not enjoy the experience Nursing staff need to be more aware of the psychological impact that inability to communicate can have on a patient On leaving hospital nurses had difficulty dressing the wound mainly due to not having correct dressing or expertise. It was very noisy which made sleep difficult. I was very apprehensive when time came to remove trachy. There was social

isolation because of unable to speak. The discomfort was due to lot of mucous production, the yanker sucker was my best friend. The trachy is not a pleasant experience and knowledge of how it will be will not make it any easier for me - my apprehension will still run riot.

The first time I had the trachy removed it was stuck and the doctor who removed it was very forceful removing it - maybe could have used a lubricant to make it easier to remove. It was a very frightening experience

There were 2 things that I found particularly distressing - not being able to communicate with health care professionals particularly in the first days after the operation. I felt incredibly vulnerable and frightened. I could not communicate my concerns. Secondly the tube getting blocked with secretions. It was a miserable experience especially at nighttime. When I tried to alert night staff on three occasions I was told that there was nothing wrong with me, when I believed I was choking to death. They would not allow me to write my concerns so that I could write my concerns. I eventually asked a nurse to show me how to use the suction pipe so I could relieve the problem myself. I had nightmares for months afterwards.

There were times when I needed suction, then it was difficult and frightening and I felt I could not breathe. They took tracheostomy out after 5 days but oxygen levels were down and they tried to put it back in twice but could not. Not

very pleasant. I was on oxygen for a day and left 2 days later. All goes well . Trachy scar could have been neater. Was glad to have it removed to speak. When the device was removed, the scar did not heal well, I had to have the wound cauterised.

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