Imagine not being able to eat freely, talk properly or even just cough – all of them daily functions denied to anybody who has undergone a tracheostomy.
The procedure – which involves inserting tubing into a patient’s windpipe to help them breathe – is often key to keeping people alive after damage to their brain or spine, caused either by injury or illness. But, in the process, it can rob them of many of life’s necessities.
That was the outlook which confronted Nick Lovell from Blackpool when he awoke from a coma after a devastating brain condition befell him almost four years ago. The then 32-year-old had gone to bed with a strange feeling in his feet – but within hours of getting up the next day, he was on his hands and knees, unable to move.
Nick had been dealt an extremely rare double blow – the onset of the neurological condition Bickerstaff Brainstem Encephalitis, together with the autoimmune disorder Guillain Barre Syndrome.
He would spend nearly two years in Blackpool Vic and the Royal Preston, after initially being paralysed from head to toe.
“I remember coming round and, mentally, I was able to do everything,” Nick recalls. “The message goes from your brain to your arm to scratch an itch, but there’s no response – that felt a bit strange.”
The father-of-two was immediately aware of everything that was going on around him, but unable to do anything other than offer the first flickering of a smile.
Sadly, he had little reason to do the one thing which his body grudgingly permitted. The road to recovery was going to be long and would involve many months using a tracheostomy to enable him to breathe.
“The weirdest part was not having any cough reflex. Instead, there was a machine which mechanically makes you cough and then they used to suck all the sputum away. That was the worst bit – you didn’t look forward to that half hour”, Nick says.
Given the scale of the other challenges facing him, it is perhaps unsurprising that Nick accepted the effect of the tracheostomy on his life more readily than many people might have done.
But even as he slowly regained movement, the equipment left him unable to eat – a keenly-felt loss for somebody who, prior to his illness, could often be found in the kitchen. Yet Nick still managed to find pleasure in talking about meals, even if he could not enjoy partaking in them.
“I’d sit there in intensive care, nil by mouth, and I’d be watching one cookery show after another,” he remembers. “You don’t feel hungry or thirsty with the liquid food they give you, but the one thing I wanted to be able to do was eat.
“I’d be thinking about what I could have for my tea and I’d always talk to visitors about what they’d eaten. There were a few nurses on the ward from different countries and they’d be talking to me about their own national dishes.
“I was next to another patient whose wife used to bring him fish and chips. It was torture and I’d be drooling over the side of my bed – but I thought, ‘One day, I’m having that,’” he smiles.
For Nick, that day came after six months when he was transferred to the Royal Preston for rehabilitation and was seen by a respiratory team who had made it their mission to remove tracheostomies the moment patients could cope without them.
Now, that same team at Lancashire Teaching Hospitals NHS Foundation Trust is spearheading a county-wide effort to take out any tracheostomy which has been left in place for longer than necessary – or even indefinitely.
According to Nick, removing the tube is key to helping people recover from whatever underlying condition caused them to require it in the first place.
“Early on, I was told that I wouldn’t get down to rehabilitation if I’d had the tracheostomy in – so, for me, I had to get it out as soon as possible.
“There is a non-invasive, portable machine available which can be used as and when you need it. You can always have it with you, but you don’t have to carry round a ventilator, suction and all that goes with a tracheostomy – it just allowed me to take the next step of freedom,” Nick explains.
Taking out the tubing also gave him one less thing to worry about when his recovery hit bumps in the road.
“The goal was to get out of hospital and [when] that day came, everything was great and I was at home with the family. But the following week, I was on my own for the first time.
“That was the biggest shock – all of a sudden, you’re sat there in a wheelchair in front of the TV and it suddenly dawns on you. I was worried that I couldn’t be the dad I wanted to be and I couldn’t do the stuff that I’d imagined I’d be able to.”
Nick now wants to help others avoid the “psychological dip” which he experienced and hopes that fellow patients suffering from debilitating conditions will be more receptive to help with their recovery if they do not also have to contend with a tracheostomy.
“I had nobody to talk to. If somebody who had been through it had been able to tell me that life would be different, but not over, it would have given me that positivity.
“If I can give somebody a better outlook on life, I’ll have achieved something.
“I’d love to be able to use aids to walk just to the shop around the corner and to be more independent without having to rely on my wheelchair. Over time, I’d love to be able to get back to work at [services company] Sodexo.”
Of all that he has already achieved, there was one battle which the born and bred Blackpool lad was particularly eager to win – losing the Liverpudlian accent which he had strangely developed during the months spent without speech.
“My tongue and vocal chords were paralysed and when I got my voice back, for some reason, I had a Scouse twang.
“I had Liverpool-supporting friends who bought me a mug saying, “Liverpool’s No.1 fan”, laughs the Tangerines supporter.
TRACKING DOWN THE TRACHEOSTOMIES
Medics at the Royal Preston Hospital are trying to track down patients from right across Lancashire and South Cumbria who could benefit from having tracheostomies removed.
Lancashire Teaching Hospitals NHS Foundation Trust (LTH) has been handed £135,000 by health service commissioners to run a 12-month pilot project identifying people who should have the breathing tube taken out.
Tracheostomies are usually put in place if a person has suffered a brain or spinal injury or a medical episode like a stroke, which leaves them unable to breathe unaided.
But while the procedure is relatively straightforward to reverse, finding the people in need of it is not as simple as it may seem.
“In recent years, there have been more tracheostomies performed to help get people out of intensive care and onto the wards,” consultant physiotherapist Rachael Moses explains.
“Unfortunately, a lot of these patients are [then] discharged into specialist nursing or residential homes, with no [hospital] follow up.
“But the impact for that individual and their families is massive, particularly for younger patients who maybe have children whom they can’t communicate with. And the other problems of not being able to talk or eat [lead to] a poor quality of life.”
Tracheostomy patients require their tubing to be changed on a regular basis, but this is often done in a community setting – meaning there is no central register of those living with the procedure over the long-term.
“As crazy as it sounds, we don’t know where [all of] the patients are – some may have been discharged many years ago and are lost in the system,” Rachael says.
“A lot of the care packages [required for tracheostomy patients] were historically funded – so it was agreed when they were discharged from hospital that this level of funding would be in place. And because of resources and time, these care packages aren’t reviewed regularly.”
Before getting the go-ahead to launch the new project, Rachael and her team found five patients who had been left with tracheostomies in place for at least three years. All were successfully weaned off them and had the tubes removed – and then received speech and language therapy to regain their voice.
It is estimated that the saving for the NHS amongst those five patients alone is half a million pounds each year, as they will no longer need the daily – or, in some cases, hourly – monitoring of their tracheostomy equipment. They will also be at a far reduced risk of infection.
But while Rachael is hoping to help as many patients as possible over the next year, she believes the fewer people sent home with a tracheostomy in the first place, the better.
“At Lancashire Teaching Hospitals, we’ve not discharged one patient in the last 14 months with a tracheostomy,” Rachael says.
DO YOU KNOW ANYBODY WHO COULD BENEFIT?
Relatives or medical professionals who know of anybody in Lancashire and South Cumbria with a long-term tracheostomy in place are asked to e-mail: firstname.lastname@example.org
THE TRACHEOSTOMY WITH ITS OWN TWITTER HASHTAG
He may live 70 miles from the Royal Preston, but Barrow resident Ian Wardle is one man glad that Lancashire Teaching Hospitals (LTH) is casting its net across the whole of Lancashire and South Cumbria in the search for tracheostomy patients in need of help.
The 69-year old has lived with a progressive condition which has reduced his muscle control since he was in his early 20s. He has been tetraplegic for the last 15 years, during five of which he has also had to live with a tracheostomy which left him unable to speak or eat.
It was finally removed last April and Ian is gradually rediscovering his voice, in part thanks to speech therapy over social media.
“Obviously, it would have been unrealistic to expect muscles not used for so long to start working immediately,” he says, via the speech synthesiser on which he still relies to communicate for now.
“With the support of the LTH team and my care staff, my lungs and airway have gradually strengthened and I am confident this improvement will continue as the muscles get more use.
“The process of using Twitter was a new experience for me, but the speech therapy, in conjunction with better breathing, means my ability to communicate directly with people is now possible again. Usually, it’s just single words at the moment, but it is a work in progress and it gives me a goal to work for,” Ian says.
The LTH staff have even built up an online following of people wanting to see how Ian is progressing – using the hashtag, #ianstrache.
His carer, Derek Jefferson, adds that there have been some other unexpected bonuses of having the breathing tube taken out.
“His first request was to get back into polo neck jumpers,” Derek laughs.
“But in all seriousness, Ian is a very intelligent man and for him to have his voice back will be amazing. It isn’t a quick process, though – there is a lot of effort which he has to put in.”