Transcript of the PMG 2016 Aldersea Lecture presented by Ray Hodgkinson MBE, Director of Public Affairs for the British Healthcare Trades Association (BHTA), on 20th July 2016 at the ICC Birmingham.
Photographs courtesy of Karim Uddin and Suzie Hunt
I am delighted to be here today, honoured to give the Patsy Aldersea Lecture; pleased to talk about her and her commitment, and about the progress on issues for which Patsy campaigned so effectively.
I am going to speak about some major milestones, and then I want to have a look through the “crystal ball” at what the future may have in store for us.
But first, a few words about Patsy Aldersea.
I consider myself fortunate to have known Patsy, to have worked with her, and to have seen very closely the impact that she made on the industry. It is entirely appropriate that her life, her work and her very considerable contribution to it, is recognised by holding this annual lecture in her name. She made a real difference to patients, to the profession and to the changing of attitudes.
Patsy was a founder member of the Posture and Mobility Group, and an active member for many years.
When she retired, she wrote in the PMG Journal about some of the changes she had witnessed over the preceding 50 years:
- Changes in culture such as recognising people as being ‘wheelchair users’ instead of being ‘wheelchair bound’
- Changes in approach, as technology developed and there was greater recognition of the opportunities to support those users
- Changes in recognising that 24-hour postural management programmes require cooperation between agencies and the sharing of resources
It is now 18 years since her landmark publication Wheelchair Users and Postural Seating set out a proper clinical approach to the issues. Together with Ros Ham and David Porter, her work helped change the landscape of how these issues are addressed.
So much has changed since Patsy Aldersea was an occupational therapist in Holland in the late 1950s and returned to England in 1960. Life expectancy in particular has increased enormously. Men who retired at 65 in the 1960s would generally only enjoy a retirement, with a state pension and quite limited health and social care, for around two years, because their life expectancy then was just 67 years. Men retiring now will expect to enjoy a retirement of around twenty years, with the expectation of a state pension guaranteed to increase in value alongside much higher levels of NHS and social care, particularly in the last eight years of life, as they live to an average of 85 years, with women living for longer.
These demographic changes are increasing and so, consequently, are the demands made upon the health and social care system. Over the next 20 years the population aged 65-84 will rise by 39 per cent, and those aged over 85 by 106 per cent. Longevity and ageing, coupled with the growth of long-term conditions, such as obesity and diabetes, will place increasing strains on every aspect of provision.
Whilst the demands are increasing, advances in technology are enabling us to support people to live better and more independent lives. There have been major improvements in technology, both in materials and in production techniques; there is better understanding of the science behind potential solutions to support people, and there is also now better education about the issues. An example of this better understanding is the international standards work on pressure care.
However, there is still a need to improve communication about the issues, and to secure greater funding.
We want people to be able to benefit from all this development, and not be discriminated against in leading their lives as fully and independently as possible.
My whole life has been based in the assistive technology sector, particularly ‘Posture’ and ‘Mobility’.
I did not plan this career however - in fact, way back in 1958 I made a poor attempt to go into medicine! Then, after a couple of other jobs, I talked my way into becoming a medical representative.
I also experienced an early introduction to disability, spending time working with Scope, the charity that was then called the Spastic Society. This insight may well have influenced my interest in finding solutions for those much less able to lead a normal life.
Dealing with people who have profound disabilities became part of my life, and I saw how much difference could be made to the lives of many people by improving their mobility. When I look back at those early days in the pharmaceutical industry it was, in many ways, a truly exciting time. Apart from the superb training I received, I also had the pleasure of seeing a plethora of new drugs entering the market, and I was one of the first people to sell contraceptives pills to general practitioners. What an extraordinary time it was. Little did I know then what a massive impact this was to have on the lives of women and society - it made a difference! I do believe that for women’s lives and for families, this was one of the most important and significant developments of the last century.
The pharmaceutical company I was employed with soon launched into an acquisition programme, and I was to participate in the development of a whole range of equipment - the first resuscitation trolley, surgical instruments, specialised equipment for disabled children, wheelchairs, orthotics, prosthetics, urology, stoma care, pressure care and more. What came out of this was fortuitous, in that it sent me off to a new opportunity - setting up Newton Aids which sold the first ultra-lightweight wheelchairs and early powered mobility wheelchairs, built by disabled people at a Spastic Society factory in Birmingham. It would have been very difficult therefore not to have met Patsy Aldersea!
And then came Raymar, which enabled me to introduce a number of “firsts” such as the Roho cushion, Babitens (a device for pain control in childbirth), neuromuscular stimulation for scoliosis and kyphosis, and the first mobility scooter - the Amigo - in 1978. I think it was the first time I fully appreciated the future for assistive technology and the difference it could make; however, convincing the authorities about funding was another story.
During this period, I was at the birth of PMG and I remember the excitement and optimism of the first meetings, informally in Salford and then the first proper PMG conference in Swansea in 1992.
PMG has really made a difference: ensuring a greater profile for the profession, stimulating research, enhancing training and development and, above all, in improving care for patients. PMG has always worked closely with the British Healthcare Trades Association (BHTA), which was originally founded as the Surgical Instrument Manufacturers’ Association in 1917; I was first a member of it in 1968.
Mobility is paramount to us all, and any impairment to it, temporary or permanent, is a fear and a challenge; BHTA and PMG have been effective voices for the assistive technology sector. More recently the National Wheelchair Alliance, led by Baroness Tanni Grey Thompson, has raised the profile of the issues with its charter ‘Right Chair, Right Time’, and continues working to produce recommendations to NHS England for improvements in standards, training, and education of professionals.
The case for wider use of assistive technology is now made, and many organisations, such as the Centre for Economics & Business Research, the King’s Fund, the London School of Economics and the University of York Health Economics Department, have highlighted its economic value. The need for it is highlighted in the United Nations Convention on Human Rights of Persons with Disabilities, which identified access to mobility aids, assistive devices and technologies as a human rights obligation that every member state must fulfil. The World Health Organisation at its conference on Global Co-operation on Assistive Health Technology considered these issues in July 2014. It urged specific action and greater investment to ensure all persons with disabilities, and others in need, irrespective of their age and health condition, enjoy better health, especially in terms of functionality, independence and quality of life. This paradigm shift in assistive health technology creates a clearer and better future in which industries and the professions can develop.
In this industry we touch people, we alter their being, and we make a difference to their lives, so that they can contribute and participate more fully in our society. This special responsibility must be fully appreciated. And the importance of assistive technology to people with different conditions, whose numbers are growing, and for whom technological advances can help deliver major improvements in their lives, must be recognised.
This makes you all an important and vital part of the future.
The growth in demand, brought about by demographic changes, will need a more professional and better skilled industry. People whose movement is impaired in any way, be it through loss of a limb, neurological issues, an accident or just old age, deserve high quality attention and the prospect of outcomes that meet their needs. The quality of life of an individual is paramount.
The challenge to individuals must not be underestimated, and assistive technology solutions should be seen as everyday events. Acquiring necessary products and services should be a comfortable experience, whether through the NHS, local authorities or when buying online or in a shop.
There is a high degree of unhappiness with the current model of provision, which is not surprising since it has not altered in many years. I myself have been involved in 12 wheelchair provision reviews, without seeing a successful outcome yet!
People are now better informed, more able to question and challenge, and they expect good service, because that is what we are all entitled to expect. Why should that principle be any different when acquiring a mobility solution?
If we were told that the wait for a wheelchair is 18 weeks, I wonder how we would feel and react?
It’s just not credible, but that is what NHS England currently support. The Alliance work is aimed at rectifying this.
Therefore, the potential of personal health budgets (PHBs) - some may say vouchers by another name - offers a new opportunity. Putting the power and means in the hands of patients and their families fundamentally alters the situation. The service suppliers become obliged to perform as in any other buying experience.
And that creates a competitive environment from which improvements will be needed in order to compete, probably driving greater innovation and more need for qualification.
I have argued that the move towards PHBs is long overdue, and could be far better for patients and prescribers. The current situation is procurement driven, and often based simply upon lowest apparent cost. But this can stifle innovation and lead to a commoditised model with fewer suppliers and less choice. I remember such a situation in the 1960s, with one model to fit all.
Provision of choice is now in real danger, and many of you will be experiencing constraints. In a market where customers rely on customisation, innovative solutions and products to meet the wide variety of human needs, we have to move to something that will stop that spiral of restraint and enable people to get something better. I believe that it is competition in the market place that can best help contain costs and prices.
A good example is the spectacle market. Why not have something similar? It works well, and you can still be supplied an NHS pair of glasses if that is what you want.
So, how can we move forward together and make a difference?
BHTA and PMG have a long history of co-operation and I am sure this needs to continue.
We live in dangerous times in terms of the potential provision of what is needed, and there are many challenges ahead, particularly in relation to funding. We need professionals, patients and industry working together to help shape government policy. We should therefore explore a closer relationship between us and other related organisations.
There are forums that want to hear from us: the House of Lords has recently established a select committee to consider the long term sustainability of the NHS (evidence and submissions are required by 23rd September 2016); the House of Commons Select Committee on Communities and Local Government is examining provision of social care by local authorities (submissions are required by 19th August 2016). We need to ensure that the sector raises its profile, is seen as a speciality in its own right, and that more resources are devoted to skills, training and education.
BHTA has created the Healthcare and Assistive Technology Society (known as HATS) in an attempt to raise the standards of those without professional qualification who deal directly with people. In the near future, it will manage the Professional Standards Authority Register. We need to co-operate in regard to this too.
There has been a recent shock to confidence in our economy, a recession is possible and such uncertainty never helps anything. But whatever happens, we need to work together.
It has been clear for some years that the growth in PHBs is inevitable and brings advantages and risks, depending upon how they are set up and managed. We can work together to help frame how they are best developed and adopted. We also need to recognise that we will not be able to assist many more people without a public education programme about assistive technology. We can work together to widen the public recognition.
And, of course, we constantly have to be addressing issues about standards.
All of us are used to making a difference to peoples’ lives. Long may that continue. You all have a part to play in this growing market place, but let us also be prepared for what is to come.
Ham R.O., Aldersea P., Porter D. Wheelchair Users and Postural Seating: A clinical approach. London: Churchill Livingstone, 1998