Today I will be talking to you about the importance of advancing Non-Invasive Ventilation (NIV) healthcare by collaborating with the experts – The Patients!

To set the scene, I want to immediately start by changing the title of this session. I will NOT be talking about NIV and end of life care, I shall speak about the beginning of a new, healthier and happier life with NIV. I will also share with you my views about what I and other disabled people feel is the most valuable support and advice available in our NIV journey and what isn’t so helpful.

So let’s begin by setting the record straight. The common social narrative about people who depend on a breathing machines, is one of a tragic sign of significant deterioration before the inevitable end. “I don’t want to end up with tubes and relying  on a ventilator for the rest of my life. A phrase I have heard time and time again, as I sit before them, relying on my tubes and ventilator!  This attitude is not good for them and it is certainly not good for us. I want this social stereotype to change and that’s why I am delighted to be here today to garner your help in this quest.

So let’s begin with my own story. 10 years ago, I landed the job of a lifetime. Independent Crossbench member of the House of Lords. Not bad for a disabled person who’s mother was told on my first birthday, that I was unlikely to see my second. This was the accepted prognosis for children like me then and it is still perpetuated, though not as much, now. By the time I reached 25, with 2 degrees and a career in local government, the medical experts, thankfully gave up predicting my imminent demise. 

If I look back at my relationship with NHS care over the years, I can safely say, I have had the very best support and interventions and at times, the worst. Throughout, I have learnt a great deal about the relationship between those who provide, and those who use NHS respiratory health care  and have spent many years developing a new model to  improve this relationship for both. I refer to it as “the empowerment model of health care delivery”. This perspective drove my thinking when I Chaired the Social Care Institute for Excellence and continues as I contribute to national policy and legislation on Health and social care now in parliament. It has also kept me alive and safe during challenging times in my own personal journey of living with acute respiratory deterioration. Both are mutually intertwined, giving me a unique perspective in the field and landing me in some amazing jobs, especially the one I do now. 

I began using NIV at night times about 25 years ago as I was getting weaker, and felt tired all the time. I was also getting more chest infections. I was referred to St Thomas’s Lane Fox Unit, where I have been a patient ever since. I considered myself very fortunate. This unit in my view, has the gold standard when it comes to the care and support of people with respiratory difficulties. A unit, which celebrates disabled patients lives, whatever their condition; most importantly, a unit that understands patients are far more than our diagnoses and are a rich source of respiratory ideas and expertise. 

They know and respect we live ordinary lives, like everyone in this room. NIV patients work, or are in full-time higher education. Many look after their families, some are responsible for voluntary projects. We are not simply patients waiting for care. The Lane Fox Unit recognises this and goes over and above to ensure our treatment fits in with the demands of our lives, rather than the other way round.

Why is the Lane-Fox Unit so good at the care of NIV patients? In my view it is firstly, because the unit has a history of partnership between patient and doctor that goes back to its foundation; secondly it has progressive, emancipating leadership. And thirdly, it is in touch with the latest NIV developments and conducts its own research in this area. 

Let’s start with leadership and patient partnership. Whilst, historically Consultants saw patients with long-term irretractable disabilities as victims best left to Social Services and charities to look after, the first clinical director of Lane Fox, Dr Geoffrey Spencer pioneered the use of home ventilation and self care. His vision in the ‘60/70s was to get patients in iron lungs out of hospital so they would be free to live their lives to the full. He even went as far as to organise trips abroad for people in iron lungs: totally contrary to every risk assessment, but how liberating and empowering for the patient! 

He and one of his patients set about forming a Patients Association which for years, not only raised money to build the Lane Fox Unit but went on to buy furniture,  aids, adaptations and equipment they felt would improve the quality of the LFU Patient stay. The association continues today putting forward suggestions as to what NIV devices work well and, importantly be improved. The Lane Fox Unit has remained faithful to this patient/staff collaborative ethos. Together they ensure that however incapacitated you might become, there is a pathway to living, not just surviving. Holistic solutions are the Lane Fox Unit’s mantra and the tectonic plates of power have been shifting!

Sadly, patient collaboratives like this remain the exception rather than the rule, both in the UK and internationally. There are still too many in the hospitals and the community where the culture of the clinical specialist knows best is practised, whether they be Drs, Nurses, NIV technicians, designers etc, etc.  When you are a seasoned Lane Fox patient who finds them self in a less progressive and collaborative hospital, this is brought into sharp focus.

Let me give you an example of my own experience of this. 

… 10 years ago I was rushed into my local A&E and then up to ITU with severe pneumonia in both lungs because there wasn’t a bed free at the Lane Fox and I couldn’t wait. 

The consultant said to my husband and me: ‘You are very ill. If you go into respiratory failure I presume you won’t want to be resuscitated or put on a ventilator.’ I was so ill, I couldn’t muster the energy to question this. The consultant went on to say that the chances of weaning me off ventilation would be very remote – ‘And you wouldn’t want to live on a ventilator , would you?” he added. When my husband said that meant I would die, so of course she wants to have all the interventions necessary, the consultant looked a little puzzled but let it drop. We thought that was the end of the matter.

The next day I was visited by another consultant, this time the head of ITU who repeated the treatment plan. Again my husband protested, and by now we were both very scared that they would not do everything to save me should I get in trouble.

My husband dashed home, grabbed a recent picture of me graduating with my doctorate, came back to the hospital and beseeched: “This is my wife, not what you think she is is. You do everything for her just you as would for anybody woman with double pneumonia and cannot breathe. She is at the top of her career and has everything to live for.”

Suddenly everything changed and they pulled out all the stops to keep me alive until I was well enough to flee to the Lane Fox unit, my safe place. But the lesson I learned was that attitudes needed to change and as soon as I got back to work, I went about trying to address this health inequality. I was lucky that day that my husband was by my side to fight for my life. Many are not as fortunate. 

I still remember vividly, those few nights, forcing myself to stay awake, fearful that if I went to sleep I’d never wake up.

NHS culture is changing. Much has been done to help all those  engaged in NIV patients health care, understand that breathing machines are not the last resort and they do not signify end of life!  People who do not know me believe I live without dignity because I need all physical tasks to be done for me, by another person or machine. 

But does this look like a woman without dignity as she speaks in a Lords debate? Without power ? Without Purpose? Or this one, without Joy? Without love?

Adults who use NIV and other invasive breathing machines, like me, can tell a very different story but we can only tell it, because we have people like you in our lives who support us to live life to the full. Your jobs now and an in the future must be focused on working with NIV users to find the solutions to

Living life to the full with their best friends – NIV masks, tubes  and machines!

So that brings me finally to research and Development with. not for, NIV users.

So in my case, I would like a more attractive mask, smaller  ventilator, and outlet valve that doesn’t freeze me and anyone who sits next to me! I would suggest that designers  and technicians, look to experts like Dr Adolf Ratzka. This was the man who sought out the silicone mask I use now, not the respiratory clinicians. They were only able to show me the hard plastic, hospital approved masks, which meant the cheaper, ugly, more uncomfortable ones! 

Adolf has recently modified a silicon mask which reveals more of one’s face – I can’t wait to watch his Utube video on how to do this. NIV users are adapting and sharing ideas on NIV globally now! In fact I first learnt about the cough machine from a fellow SMA NIV user and I’m now using one every morning – I haven’t had pneumonia in five years!

Encouraging NIV mutuality in caring, learning, designing and transforming how care is delivered is the job of all of us in this room. When the patient begins to use NIV, it must not be seen in terms of end of life care – it is the beginning of a new life. A healthier, happier life than before. A life of less anxiety, regained cognitive sharpness and energy to continue with whatever path you have chosen.

I hope the most important to thing you will take away from my contribution is – advances in NIV technology and care, can only be achieved by us working together in equal partnership. Users are the experts in their own situation. So nothing about us, without us please.