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Working as a National Health Service rheumatology consultant for the past 30 years I have witnessed the decline of British rehabilitation. As chairman of the Disability Living Allowance Advisory Board since 1993 I have watched an escalation in the cost of disability benefits. Are these two phenomena related?
My starting point is the present parlous state of rehabilitation services (and in particular, the vocational rehabilitation services)1. How were we reduced to this? Medical rehabilitation in the UK was born out of the necessity of returning injured servicemen to the battlefield in two world wars. In the First World War Sir Robert Jones pioneered the rehabilitation of wounded soldiers, predominantly those with fractures. But this was not translated to the civilian scene in the post-war years. Further interest was generated during the Second World War by the shortage of manpower both in the armed services and in the munition factories. Amazing results were achieved. For example, out of 20 000 airmen admitted to RAF orthopaedic units for intensive rehabilitation between 1941 and 1945, 77% returned to full duty and 18% to modified duty; only 5% were invalided out of the service2.
The Piercy Committee in 19563 looked on rehabilitation as the whole process of restoring a disabled person to a condition in which he is able, as early as possible, to resume a normal life—with no clear-cut demarcation between medical, social and employment rehabilitation. The Tunbridge Report on Rehabilitation4 some 16 years later noted how ‘the division of responsibility for rehabilitation between several government departments had a deleterious effect on services as a whole’. The Mair Report in Scotland of the same year5 recommended training specialists in rehabilitation. Its rapid implementation gave Scotland a head's start over the rest of the UK—a lead that is maintained to this day. One of the recommendations of the earlier Tomlinson Committee on the Rehabilitation and Resettlement of Disabled Persons (1943)6 had been the setting up of special centres to accelerate recovery. By 1976 there were 26 ‘employment rehabilitation centres’ in England, Wales and Scotland offering 2542 places (200 residential)7.
Medical rehabilitation in England received a much-needed shot in the arm in the early 1970s when Sir Keith Joseph as Secretary of State for Health introduced a network of 25 designated ‘demonstration centres in rehabilitation’. This was essentially a pump-priming exercise to create focal points for the development of rehabilitation services, to set standards and to teach the principles and practice of rehabilitation. Money was available for capital developments and the centres were kept going with ring-fenced funds. The scheme prospered for several years while supported by central government funding.
It had always been anticipated that the administration and running costs would be taken over by regional health authorities, but no one dreamt that this move would have such a devastating effect. As the demands and pressure to maintain acute services grew in the 1980s, no sooner had the Department of Health abandoned the centres to local health authorities than the decline set in. In my own case, when New Cross Hospital became designated for closure our rehabilitation unit disappeared, almost without trace. We were not alone. Many of our fellow demonstration centres suffered a similar fate. Today there is only one—the centre at Derby—that has truly managed to maintain the ethos and enthusiasm of those early days, retaining the title of National Demonstration Centre.
How did an impressive network of rehabilitation facilities across the country come to virtual extinction. Was it really all due to the inexhaustibly voracious appetite of acute services, relentless in the face of tightening budgets in the 1980s and 1990s? I think not. Could it be that we, health professionals, perhaps unknowingly and unwittingly, even colluded in what was happening? Rehabilitation has never been a popular clinical specialty among health professionals in the UK, because it is seen as low-key and its benefits are slow-stream rather than dramatic. Did physiotherapists forsake rehabilitation for the more glamorous role of hands-on therapy in intensive care or manipulation? Did occupational therapists follow their physiotherapist sisters and brothers into the acute sector because it carried more kudos? Did they become willing partners in establishing their new role as facilitators of early hospital discharge? Is the assessment of patients for going home from hospital really more satisfying than rehabilitating them for life?
My own specialty of rheumatology bears a particularly large burden of responsibility. Since the Second World War the specialty of physical medicine had held responsibility for medical rehabilitation. Until 1970 physical medicine was loosely linked to rheumatology (then a new and burgeoning subspecialty with strong links to general medicine). In the early 1970s the combined specialty became known as rheumatology and rehabilitation. Its consultants accepted the responsibility for rehabilitating patients with rheumatic disorders (with a greater or lesser degree of enthusiasm), as indeed did consultants in other subspecialties—geriatrics, orthopaedics, paediatrics and psychiatry—but in common with them eschewed the rehabilitation of patients outside their specialty. The Royal College of Physicians commented in 1986 that ‘England & Wales are almost alone amongst western countries in having no medical specialty of physical medicine or its equivalent. Only a handful of consultants have a full-time commitment to rehabilitation. This country is therefore engaged in an important, if unplanned experiment. Is it possible to set up an effective care service for the physically disabled without a substantial specialty of rehabilitation or its equivalent?’8. It presumed the answer was yes, but time has proven otherwise.
The trend here was quite contrary to the path taken in France and other European countries where physical medicine consultants still abound, despite an even greater number of rheumatologists. Thus in France, a country of 62 million people (a population very similar to our own) there are 1760 accredited physical medicine and rehabilitation specialists as well as 2200 rheumatologists (equivalent to 2.87 and 3.6 per 100 000 of the population, respectively). In the UK the equivalent figures are 100 rehabilitation medicine consultants and associate specialists and 390 consultant rheumatologists (0.2 and 0.65 per 100 000 of the population). Admittedly, I am not exactly comparing like with like in that the UK figures are all hospital based NHS consultants, whereas in France they do include large numbers of spécialistes de ville. Nevertheless the gulf is vast and is seen across Western Europe9 (Figure 1).
The name rehabilitation was dropped and our specialty became known as rheumatology when the disciplines finally split in 198110. It seems that British rheumatology took the wrong turn in the 1970s when it largely turned its back on rehabilitation, and now we are living with the consequences. The ‘true rehabilitationists’, who formed the British Society of Rehabilitation Medicine and the Society for Research in Rehabilitation, have demonstrated an impressive record of achievement (particularly in Scotland, where they are more numerous) despite their small numbers.
There are three principal types of benefit in the British system—category benefits, insurance benefits and meanstested benefits11. In the first category are the Industrial Injuries Scheme, Severe Disablement Allowance, the Disability Living Allowance, the Attendance Allowance (the equivalent of Disability Living Allowance for applicants of 65 years or over) and the Disability Working Allowance (recently replaced by the Disabled Person's Tax Credit). Under the rubric Insurance Benefits is the Incapacity Benefit, which replaced Sickness Benefit and Invalidity Benefit in April 1995. As a means-tested benefit there is Income Support.
There has been a progressive year-on-year rise in the numbers of people in receipt of Disability Living Allowance and Attendance Allowance since they were introduced in 1992, greater in the case of the former: the numbers on Disability Living Allowance have almost doubled over the past eight years, while those on Attendance Allowance have risen by 45% (Figure 2). The expenditure, by contrast, has risen threefold in the case of Disability Living Allowance and almost twofold in the case of Attendance Allowance. The combined bill has risen from £3.5 billion to £8.9 billion (Figure 3). Coming now to Incapacity Benefit, in the late 1980s and early 1990s the expenditure on Sickness Benefit/Invalidity Benefit was rising exponentially. In 1994 they were replaced by Incapacity Benefit, since when the trend has gone into a gentle reverse (Figure 4). The total expenditure on Department of Social Security benefits on sick and disabled people has risen fivefold from £5 billion to £25 billion since 1984 (Figure 5).
The decline in rehabilitation services is clearly not the only, or even necessarily the principal, cause of the enormous rise in the take-up of disability benefits and their cost. Other major influences are the economy (a correlation between social deprivation and uptake of benefits has been observed), the decline in manufacturing industries, employers' fitness requirements, disability discrimination and waiting lists for hospital treatment. I suggest that the lack of rehabilitation services has been an important factor, particularly on lengthening time on benefit in the 1980s and 1990s.
What is the evidence that they are causally related? In Norway Claussen has concluded from a study of 668 applicants for disability benefits that the continuous downgrading, over many years, of resources and institutions for vocational rehabilitation was the main reason for the infrequent use of these services12.
The Disability Living Allowance Advisory Board (DLAAB), an independent statutory body which advises the Secretary of State on matters pertaining to Disability Living Allowance and Attendance Allowance, published a report in March 1998 entitled The Future of Disability Living Allowance and Attendance Allowance13. Among possible reasons for the greater than anticipated take-up of the two benefits in over 5000 cases scrutinized, it cited ‘a significant degree of avoidable physical and psychological disablement resulting from the lack of investment in local clinical and rehabilitation services leading to delayed or ineffectual management of treatable diseases’. Statistical confirmation of this and other assertions made in the report was derived from a study commissioned by the DSS and undertaken by the social research branch of its Analytical Services Division14. Of particular relevance here is the light it shone on the use (or non-use) of potentially useful rehabilitation aids, appliances and adaptations. Overall, no fewer than 96% of Disability Living Allowance and 90% of Attendance Allowance recipients had been provided with a rehabilitation aid, appliance or home modification of one kind or another. But only 67% and 87%, respectively, of the recipients reported using them. Of those who did make use of them, 10% reported a big reduction in care or mobility needs, 84% some reduction and only 6% no reduction at all. In the DLAAB's opinion, in 50% of Disability Living Allowance cases there were aids/appliances which had the potential to reduce claimants' care needs (34% in the case of mobility needs) but had not been provided. The equivalent percentages for Attendance Allowance were 69% and 53%, respectively. The possible implications for expenditure on disability benefits may not have hitherto been appreciated.
Since the award of Disability Living Allowance or Attendance Allowance is broadly predicated on a demonstrable dependence on others, one might have supposed that the use of means to promote independence would reduce eligibility for the benefits. In fact, the opposite appears to be the case. Paradoxically, rehabilitation aids and appliances are often seen by decision makers as the trappings of disability rather than as a means of its eradication. A change of philosophy is clearly called for here.
For many years it had been known that people in receipt of social security benefits are rehabilitated less frequently than non-beneficiaries15, and that the offer of services for rehabilitation to a disabled person may be perceived as a threat to his or her income16. Such secondary gain might serve to diminish the uptake of rehabilitation on offer and also the willingness of disabled people to return to the workforce. The present system (at least as far as Disability Living Allowance and Attendance Allowance are concerned) rewards people for what they cannot do instead of for what they could do if they took advantage of the rehabilitation they needed (provided, of course, it was offered to them). Thus, benefit may inadvertently be discouraging them from returning to the independent life they once enjoyed. The Government's ‘Welfare to Work’ scheme is aimed at ensuring that being in work (for those who are able to work) is financially more attractive than remaining on benefit. In suggesting that an element of accountability be introduced, our report13 raised the notion that the benefit could be linked (in part) to the take-up and successful completion of rehabilitation opportunities offered. The Government has yet to implement this proposal: to do so it would need to ensure that sufficient rehabilitation facilities were available—which is clearly not the case at present.
It started with a defence necessity in war. Subsequently medical rehabilitation (funded by the Ministry of Health) worked alongside industrial rehabilitation (funded by the Ministry of Labour). Surely the way forward is for the Departments of Health, Social Security, Employment and Defence together with the Treasury to pool their resources and combined ingenuities to staunch this damaging and needless haemorrhage from the economy. If there were ever a case for joined-up government, then I would suggest that this is it.
This paper is based on a keynote address to a conference entitled Vocational Rehabilitation—Moving Forward, held at Moorfields, London, on 13 June 2001. I thank the following for their help in preparation of the paper: Dr Mansel Aylward, Dr John Hunter, Dr Philip Sawney, Dr Andrew Frank, Professor Gérard Ziegler, Ms Ann Spaight, Ms Marilyn Howard and Carol Brandreth. The views expressed do not necessarily represent those of the Disability Living Allowance Advisory Board or of the Department of Work and Pensions.