Sixteen years ago I suffered a stroke, an event you would consider catastrophic, but in fact it was “The Beginning of my Life - Part Two”
From the time of my initial hospitalisation, I have been totally absorbed in the subject and have worked almost daily to improve the lot of stroke patients’ and their families.
My experience has led me through the various aspects of recovery and through this I have gathered a huge amount of knowledge and experience about how stroke care is delivered, from hospital to home and beyond. What has become abundantly clear to me is that stroke care must be delivered through a “pathway of care” which covers every aspect of this journey. A pathway that is seamless; joined up and functional, with every transition from one section of the pathway to another - seamless and well organised, with the appreciation that each and every part of it is as important as the next. This is vital when dealing with all of the aspects of rehabilitation post stroke.
Sadly in reality this is not the case. Although there are obviously examples of good practice these tend to be centre around acute hospital care, this section of care receiving a disproportionate amount of funding and political attention at the expense of the remainder of the pathway that deals with rehabilitation.
There is one exception to this however, that being that of early supported discharge into the community, and this too is variable dependent upon the geographic location and is available only for lesser disabled patients. It does not apply to everyone and must therefore be considered to be inequitable.
The provision of comprehensive care throughout the pathway is truly lamentable.
Data and statistics indicate that approximately 150,000 people suffer a stroke each year, of which a third die, a third make a good recovery and a third are left disabled. Stroke is the largest cause of disability from all sources and absorbs some 7% of the NHS budget, yet there are still some 1.2 million people in the U.K. living post stroke and we know that as the population is living longer and that the majority of strokes affect older people, the present situation will undoubtedly become worse than it presently is.
The implications for the social burden this will bring are dire, we know that a significant number of relationships falter, or run into real trouble due to the complexity and impact of stroke and we know that the current political situation and trend means that existing “Care in the Community” will be cut to reduce the cost burden - making things worse and placing more and more responsibilities on families to provide the care themselves; within their own homes, and with little or no support available to them.
In addition, we continually hear commissioners of care asking the question “where is the evidence for this provision” and often even when robust research evidence is available, it is ignored.
This brings me to the nub of my position; a passion and desire for excellence in stroke care provision and in research, in particular that of stroke rehabilitation, all matters relating to stroke must be condition specific, a speciality in its own right and not embroiled in other conditions or processes.
The patient needs I have described and my involvement in these to date, are the fundamental reasons why I want to create my Foundation and of course I do not expect to live for ever and wish to leave something behind which will continue to grow when I have gone.
It seems to me that to be able to create and continue excellence in stroke rehabilitation research we must begin at grass roots level by attracting the very best of our graduates into the field of stroke research, with the expectation that everything else would follow from there – excellence in teaching provided by an established research facility with a world-wide reputation for robust research, the resources and facilities needed for such a programme, delivered within an organisation willing and ready to support such a philosophy and purpose.
We have such an establishment here within the University of Nottingham and I wish to contribute to the continuity of this work by establishing the Ossie Newell Foundation in order to sponsor one PhD student per year, who will be committed to the advancement of stroke rehabilitation research for future stroke survivors and their families and in which lay individuals will have had real input. This will over time assist in the provision of a stronger foundation of an elite group of researchers dedicated to excellence in stroke rehabilitation research, which in turn will inform and educate the providers of stoke care throughout the stroke care pathway, as well as informing the public and stroke survivors of the areas of research being proposed, carried out and completed successfully.
So my goal is to establish a charitable organisation called the “Ossie Newell Foundation Trust” to carry out the principles and objectives I have described; as soon as it is possible to do so and I look forward to attracting all the good will and financial support I am able to muster in order to assist me in this ambitious, but highly desirable venture.
This is the essence of the strap line we use:
It is not about today, it’s about tomorrow ...