PARTICIPATION IN DISABILITY SPORT

FOR PEOPLE WITH LONG TERM CONDITIONS

 

DRAFT FINAL REPORT

VERSION 5

2011

 

 

 

 

 

 

 

CONTENTS

 

EXECUTIVE SUMMARY

 

1.   INTRODUCTION

2.   LONG TERM CONDITIONS & POVERTY

3.   SELF MANAGEMENT & CHANGE

4.   PERSONAL & COMMUNITY DEVELOPMENT

5.   LONG TERM CONDITIONS SCOTTISH PROFILE

6.   THE CASE FOR EXERCISE

7.   CORONARY HEART DISEASE

8.   OTHER LONG TERM CONDITIONS

9.   DISABILITY SPORT

10.  CONCLUSIONS

APPENDIX 1          REFERENCES

 

This report was written by Martin Hilland.  Views expressed are his alone.

 

EXECUTIVE SUMMARY

 

1. This report has two strands.  it examines long term conditions in Scotland and discusses how the needs of people with Long Term Condiutions (LTCs) are likely to develop.  Basic needs such as food and shelter are not discounted but the report emphasises the growth in need for mental and physical exercise, self fulfillment and contributing to common good. The report argues that, as the number of people with LTCs increases, there will be a signficant number who are well educated, technologically aware and confident and who will demand service improvements and participation in management.  These people can help service providers understand emerging changes in customer wishes..  However, this will only happen if providers accept that continuous improvement is central to their future.

 

2. Many people with LTCs are otherwise fit and capable.  They are a major resource which could, for example, help other people with LTCs engage in sport or exercise or help them recover from coronary heart disease, by far the most common LTC'.  They could contribute to making sports and leisure facilities truly disability-friendly.  The report then assesses the potential benefits of sport or exercise for people with coronary heart disease and with 6 neurological LTCs.  It concludes that, subject to medical advice, there is a good chance that sport or exercise will be beneficial for people with 4 out of 6 conditions.  It then analyses the portential for people with a range of conditions to participate in sports from archery to wheelchair basketball.

 

3. The second strand starts from Harry Burns' devastating analysis of the conections between social breakdown and poor health.  Scotland has been labelled as the 'Sick Man of Europe' . Burns' work shows that health indicators are not remarkable in most of Scotland but that they are truly awful in West Central Scotland.  For many people living in the worst areas 'toxic stress' has brought about biological change which makes the population especially vulnerable to some LTCs.  Regeneration programmes have achieved specific targets (e.g. in housing) but few 'crossover' benefits have been secured.  The population has fallen, more people are in work but fewer are in full-time employment and health indicators are terrible..

 

4  The report proposes a programme of personal and community development centred on the most deprived areas.  It would develop local alliances between people with LTCs  and community activists and community organisations.  Its immediate result would be a new layer of volunteers to deliver coaching and other support for an expanded and better rooted disability sport.  it should promote community pride and set out an alternative model to the social breakdown which is currently largely unchallenged.  It would undo some of the harmful 'rewiring' which some people living in poverty have undergone

 

 

5. The direct benefits of this programme would be:

·       People with long term conditions could be healthier and more fulfilled through participation in sport

·       People with LTCs and others could find fulfillment through volunteering in coaching and other support activiities

·       The community could benefit from improved local pride, improved behavioural examples and stronger social solidarity.

·       Community and sports facilities would be used more intensively by disabled people and their impact in health, social and economic develkopment would be increased

 

6. The concept of self mangement unifies the 2 strands.  If sucessful, this approach has

the potential to move self management to the centre of discussions about health and deprivation

 

7. The report sets out a proposal for a pilot project in an area with major problems of health and deprivation.

 

1 .  INTRODUCTION

 

Background

1.1  Active4All is a North Lanarkshire-based charity which promotes sport for disabled people.  In Autumn 2009, Active4All submitted a research proposal to Long Term Conditions Alliance Scotland (LTCAS) to examine the potential benefits of participating in `disability sport for people with long term illnesses.  LTCAS accepted the proposal and the research was carried out, with support from the Scottish Government's Self Management Fund.  This final report describes our conclusions.

 

The Self Management Fund

1.2  The Self Management Fund is available to voluntary organisations and community groups throughout Scotland.  Its purpose is to support work encouraging people living with long term conditions to learn more about the management of their condition and to become active partners in their own care.  The Self Management Fund encourages sharing good practice and developing innovative approaches.  The fund is £2 million in each of 2009-10 and 2010-11.

 

Long Term Conditions

1.3  A long term condition (LTC) usually lasts for more than a year and can have profound effects on people's lives.  Some people are born with LTCs while others will be affected at different stages of their life.  There is no cure for a large number of LTCS.  Symptoms may fluctuate and are sometimes progressive.  However, there are often ways of maintaining or improving the individual's quality of life.

 

Disability Sport

1.4  Public interest in disability sport expanded quickly following the British team's outstanding success at the 2008 Beijing Paralympics.  However, facilities and other support for disability sport in Scotland are still very limited.  There are a number of reasons for this:

·       Scottish Disability Sport is relatively poorly resourced

·       There  is no national centre for disabled track and field sport

·       Councils and others have invested heavily in improving disabled access to sport and community facilities but some buildings have limited potential for being fully accessible

·       Developing disability sport requires extensive training for staff and volunteers and long term support for clubs, teams and leagues.  These are rare.

 

1.5  Active4All's long-term aims are to:

·       Develop a disability sport centre which will serve all of Scotland

·       Support development of competitive disability sport at every level in Scotland

·       Support expansion of leisure sport among disabled people

·       Support healthy living and wellbeing among disabled people

·       Contribute to rehabilitation of people recovering from major illness

·       Improve the economic, educational and social status of disabled people.

 

1.6  Clearly there are limits to what can be achieved in the current financial situation. Active4All is pursuing a number of smaller projects which improve understanding of the  benefits of participation in disability sport, identify links and possible areas of cooperation and which start to improve the long term infrastructure for disability sport.  This research project aims to help progress towards these goals.

 

2.   LONG TERM CONDITIONS & POVERTY

Context

2.1  This should be a good time to discuss long term conditions and self management.  The mixture of threats and opportunities facing health and care providers should be generating new priorities and imaginative use of resources.  Long term conditions have certainly moved to the centre of discussion but much of that discussion is still within traditional boundaries.  However, there are a number of developments in understanding Scotland's health which present opportunities to widen self management

 

How come we have Baltic levels of health spending and Balkan levels of health?

2.2  Public spending on health per head is about16% higher in Scotland than in England, yet incidence of long term illness and early death are worse in Scotland than in much of Eastern Europe.  The key issue is the 'Strathclyde effect'.  The rest of Scotland's health is comparable to that in England but in West Central Scotland it is far, far worse.  The common explanation is too much alcohol, too much smoking, too much violence, too much deprivation, too much fatty food and too little exercise:.  Credible variants include, 'Western Scotland lies under the Gulfstream, so there is a lot of rain.  Many people have Vitamin D3 deficiency as a result'.

 

2.3  These explanations are not wrong but they do not fully explain the persistence of poor health in the West of Scotland.  Using data from Castlemilk, Dr Harry Burns, Chief Medical Officer for Scotland, has shown that large scale investment has successfully improved housing and other social assets.  However, after programmes lasting 20 years or more:

·       Population has declined

·       The proportion of people in employment has increased but the number of whole-time equivalent jobs has fallen dramatically

·       The proportion of people with long term illnesses has increased by about half.

 

   2.4  In the past, the additional long term illnesses have been explained as being due to stress.  Burns is far more explicit.  He argues that toxic levels of stress are associated with abuse, enduring maternal depression and neglect.  When they grow up, children subjected to these are far more likely than others to:

·       Be unemployed

·       Have criminal convictions (especially for violence)

·       Have been pregnant as a teenager

·       Have a substance abuse problem

·       Have metabolic problems.

 

 

He argues that:

·       Some early years programmes can improve children's health, economic and social prospects

·       The most effective are those where there is an appropriate engagement between children their peers and adults.

 

2.5  Burns' argument is powerful and shaming and it deserves a powerful response.  The first priority is to establish how a substantial number of Scotland's families and communities degenerated so far?  Our view is that this decline is partly explained by the long term effects of deindustrialisation:

·       Deindustrialisation took Scotland from complacency to despair in a single generation

·       Certainties about wages, status, families and community were stripped away

·       Coal, steel and manufacturing set the pattern of development in West Central Scotland. Now that they have gone, with electronics following, there is little purpose for many communities. 

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2.6  The results are stress, poverty and despair.  Respect and reciprocity in relations fade away.  Mental strength and buoyancy, vital resources in living with long term conditions, are threatened.  Deindustrialsation multiplies the impact of deprivation and moves Scotland from being moderately unhealthy to being very unhealthy.  See Harry Burns' presentation (1).

 

Conclusion

2.7  The discussion quoted aboves implies that there is little 'crossover' benefit from one area of activity into another (e.g. housing into health).  The negative effects of social breakdown are profound and deep-rooted.  Something equally strong and integrated is needed to reverse this.  'More of the same' is neither possible nor desirable

 

2.8  The NHS is not configured to do this.  GP's have becoming increasingly effective in identifying at risk groups and drawing them into screening or prevention programmes. However, they are not equipped to:

·       Handle problems of the scale of deprivation-driven ill health whivch exists in West Scotland. 

·       Engage in the personal development work which can strengthen individual responses to LTCs

·       Buiild community organisations to meet these needs..

 

.Hospital can accommodate exercise as part of a rehabilitastion stategy but they are a very expensive way of doing this in the long term.  Community and leisure facilities with appropriately trained staff and telemetric links can deliver organised exercise in buildings which are cheaper to run which may have unused capacity and which are far more local and less threatening tthan any hospital.

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3.   SELF MANAGEMENT & CHANGE

 

Self Management & The Individual

3.1  The notion of self management can explain some of the frustration and rigidities which people with LTCs encounter.  Some of these are caused directly by illness but they can also come from complacent organisations or over-intrusive helpers.  After the initial insight, it is often difficult to know what to do next to bring about concrete change.  Existing organisations may not welcome change.

 

3.2  .There is relentless pressure for change in health and care.  Scienific advances, new technologies and pressures from ageing and from poverty all contribute to this.  In industry, managers expect frequent change.  They expect to have to stay close to changing demands and retrain and reoganise to meet it.  In  health, however, agencies may argue that there is no need for change, pointing to apparent high levels of user satisfaction. (2).  However, people often express high levels of satisfaction with services while they are unhappy with them or where they are not aware of alternatives.  If people only have experience of service provision through a monolithic local state, they are likely to see change as being beyond their influence  It is difficult to envisage change if there is nothing to compare the current situation against.

 

Self Management & Quality

3.3  Client satisfaction is a key test of effectiveness and 'Fitness for Purpose'.  However,   survey results can be misleading unless questions are sophisticated enough to generate a comprehensive and nuanced understanding of what the customer wants.  There is potential for over simplification and misunderstanding on the part of the manager.  For example, both 'fitness' and 'purpose' can change quickly.  Self management cannot provide a comprehensive picture of change but it can provide a strong indication of the direction and parameters of change by showing what service users at least see as desirable and prioritise accordingly.

 

3.4  Service providers can only keep up with this if they are committed to continuous improvement.  When budgets are under p[ressure,  the first reaction is often to defend present arrangements.  However, a wide range of factors are already generating change and some current arrangements will already be unstable and indefensible.  There is no static solution to this.  Science, technology, population change and changing expectations will generate pressure for improvements for far longer than the current financial situation.

 

3.5  This is difficult for large organisations to accept.  For example. in other reports to Active4All, we have argued that designing or modifying community and sports facilities to improve disabled access is not enough to make them disabled-friendly or disabled-centred. For this, they need disabled design input and disabled staff.  They also need able-bodied staff who thoroughly understand and like working on equal terms with disabled people.  Finally. Managers and users must be open to new ideas and keen to experiment.  None of these are prominent in Scottish municipal history.  The strong and flexible response which Burns demands is not likely to emerge from current arrangements.

 

Resolutions

3.6  There is scope for disagreement about the strength if not the direction of the policy implications of self management. Dubberly for example argues that self management renders obsolete all existing relations in the US healthcare system.  We have not seen any definition of self management capable of generating such a level of pressure.  However, he does make an important point when he compares it to the trend for big organisations to seek ways to stay close to customers to monitor their changing preferences and to benefit from their imagination.  Others see self management as posing a set of specific problems which are not compatible with any comprehensive and stable solution.  If this is a realistic assessment, compromises, experiments and local initiatives should be common.  If parallelled by effective patient involvement, information collection and evaluation, this may produce better lifetime care than attempting to find a single best solution (3).

 

3.7  The Scottish Government has devolved a large proportion of policy development on long term conditions to LTCAS.  LTCAS is clearly committed to reform but it's key policy document (Gaun Yersel) (4) has a number of limitations as a source book for self management action.  In the case studies, for example:

·       There is little examination of potential for the individual patient to influence their care

·       There is little discussion of patient attainments after support

·       Most of the voluntary organisations are large and well established.  It is not clear how smaller or newer groups could offer new services

·       None of the case studies seem to imply significant changes in the organisation of NHS services.

 

In fairness, this makes it a more effective introduction for a wide audience than anything more radical.  LTCAS has made substantal efforts to develop its members' capacities and strengthen alliances between its members and others.  It also seems to have made an impact on public understanding of LTCs.

 

3.8  Commitment to change is even less obvious in 'Long Term Conditions Collaborative', the Scottish Government's guidance on care for people with long term conditions (5).  It stresses 'an enabling and person-centred approach' but it gives no indication of how patients will influence decisions.  It also describes 6 dimensions of quality to which it is committed (Safe, Effective, Efficient, Timely, Equitable. Person-centred.)  Innovation, identifying emerging conditions and addressing changing aspirations are given no place in this.  These concerns are delegated to LTCAS.  More positively, it does contain an extended discussion on health inequalities and links these to economic inequality.

 

3.9  The document then sets out a list of tactics and initiatives designed to improve participation.  It puts particular stress on community led health initiatives.  Again, this is useful but it suffers from a lack of any real discussion on the potential and limits of different forms of community involvement.  It also ignores the robust conclusions in NICE's review of community involvement in health initiatives in England.

 

'Although these approaches have been in existence for several decades, many factors prevent them from being implemented effectively, including:

·       the culture of statutory sector organisations

·       the dominance of professional cultures and ideologies in imposing their own structures and solutions on communities

·       competing and conflicting priorities

·       the skills and competencies of staff working in public services

·       the capacity and willingness of service users and the public to get involved 6 )'

 

This is a crucial set of insights.  Like any innovation, self-management threatens many people.

 

3.10 It matches experience in research for this report.  There were many helpful responses to our enquiries but there was also a surprising amount of non-cooperation.  This usually took one of the following forms:

·       The Municipal Pangloss.  'All of your points are valid in other areas but not here where foresight is total and coordination is perfect'

·       The Soft No 'We think that your ideas are very exciting.  We are sorry that noone will take your calls or reply to your emails'

·       The Incompetent Conspiracy'  ' I may have copied you into an email which, if read out of context, could suggest to an uninformed reader that we wish to '”knock the project on the head.”  I know that you will take a more sophisticated view of the text.'

 

Conclusion

3.11 The project is being conceived at a difficult time but many of the difficulties are present in good times and in bad.  These include resistance to innovation, low expectations and limited knowledge of or interest in health or social change outside the individual's immediate area of work.  These can be overcome only by pressure from above and new local networks for change which cross traditional boundaries.

 

3.12 Self management inevitably challenges existing arrangements.  Its effects will be greatest where it is allied to a commitment to continuous improvement and a will to understand and anticipate patient demands.

4.   PERSONAL & COMMUNITY DEVELOPMENT

 

4.1  In this section, we discuss a number of concepts and then integrate them into a proposal for action.

 

Maslow's Hierarchy of Needs

4..2 Maslow's theory has influenced every aspect of social science.  He allocatess human needs into 2 groups:

·       Deficiency needs.  From lowest to highest these are

◦      Physiological (hunger, thirst, bodily comforts)

◦      Safety and security

◦      Belonginess and love

◦      Esteem.

     Each must be secured before the individual will move to a higher need.

·       Growth needs.  These are only acted on if all of the deficiency needs are met.  He summarised these as self actualisation, though he also used other formulations.

 

4.3  The theory is commonly depicted in a pyramid (see Figure 1)

 

     Figure 1

     Source  www.edsynchinteractive.org

 

 

4.4  Maslow argues that as the 4 growth (or higher) needs are met the inbdividual develops wisdom which can be applied to a wide range of situations.  One implication is that when their distinctive basic needs are met, people with LTCs are not likely to become passive.  Rather, they are likely to pursue personal development, again in their own distinctive ways. 

 

   Wellbeing

4.5  'Wellbeing' is commonly used in community health settings and in situations where a medical condition has strong social and personal effects.  It is useful but there are problems with the concept:

·       It has been used at personal, local and national level but the range of variables used to measure wellbeing varies. in each of these groups  One commercial survey of personal wellbeing (7) has 7 domains., (groups of specific questions measuring different dimensions of wellbeing) with about 20 indicators per domain.  This list of domains stresses personal factors.  Others concentrate on social, economic, environmental or health factors

·       There is no clear basis for aggregating or comparing responses from different sources

·       Causality  The concept tends to have little to say about the causes behind domain profiles

·       Self management.  Models of wellbeing often mention possible benefits from some degree of community involvement and an element of personal choice but give little detailed attention to self management.

 

4.6  The New Economics Foundation has published extensively on wellbeing..  It has emphasised the term 'Flourishing' which it defines as 'people functioning well in their interactions with the rest of the world and experiencing positive feelings as a result'.  They argue that this reflects the importance of good human relations in welllbeing. (8)

 

Dignity of Risk

4.7  The concept of 'Dignity of Risk' revolves around the idea that life is inherently risky.  Giving people choices is risky but it expands their humanity.  Sensible risk minimisation is  entirely useful but the elimination of risk implies passivity and dehumanisation.  The concept has many implications in health and social care.  It is the key background factor justifying  encouraging disabled people to take part in exercise, sport or other activities to the extent that they want.  A further implication is that carers and professionals should inform, train and support people with LTCs rather than try to dissuade then from taking risks.  One problem with the concept is how to assess attitudes to risk.  For example, one side effect of some drugs used to control the symptoms of Parkinson's Disease is an increased preference for risk.  This can manifest itself in heavy gambling and other compulsive behaviour.

 

4.8  The dignity of risk is self management seen from a different angle.  It assumes that people with disability have a broadly similar set of aspirations to those which other people have.  Pursuing any aspiration involves risk of failure and there is no reason to shelter people with disability from this.

 

Long Term Conditions

4.9  Developing and promoting the idea of Long Term Conditions has been an important

step in identifying emerging needs, in asserting the dignity and common interests of those with LTCs and in putting it at a central position in debates about health and care..  However, the idea has limitations and dangers . First, the conditions vary in cause, in current level of understanding, in access to cure or relief and in prevalence.  Second, they vary in public awareness and sympathy.  Third, they vary in cost of treatment.  Fourth, representative bodies vary in priorities and strength.  They also vary in their attitudes to hierarchy and medical professionals.  Some emphasise their academic and governmental links.  Others revel in iconoclasm.  None of this is bad or even undesirable but it does suggest that divergences of interest or priorities provide potential fault lines.  Involvement in disability sport has potential to minimise some of these differences throughg leadership and improved mutual knowledge.

 

Community & Personal Development

4.10  Consensus cannot be assumed but it can come closer with leadership and a development strategy.  A community and personal development programme targeted at people with long term conditions and at current and potential community activists could bring other benefits:.

·       It would make a direct contribution to disabled people's wellbeing by encouraging and supporting exercise and healthy living. 

·       It would contribute to strengthening promotion and delivery of disability sport. Swimming and football apart, the network of clubs, teams and competitive leagues essential to draw out and develop talent is often weak or absent.  There is also a shortage .of volunteers for coaching and organisational work.  The programme would aim to help fill these gaps and build local pride in the achievement. 

·       it would build a set of alliances, capabilities and attitudes which would be mobilised to renew community solidarity.  Its natural allies would be disability and mainstream sports organisations, with community and voluntary organisations and other rooted organisations such as churches and community councils. 

·       Volunteers, new organisations and, where appropriate, existing organisations would be given intensive support.  This would include presentations on a range of sports and disability sports medicine issues, safety (health & safety, disclosure,). coaching skills, funding opportunities and reporting and audit.  The process would be documented and made available for reuse.

 

4.11  This approach has a number of advantages.:

·       Long term costs are relatively low.  Much of the replication work after year 1could be done by the new organisations and by individuals recruited in the first programme .

·       Assuming that the project's community roots are strong enough, it should contribute to community cohesion by offering role models and reinforcing local pride.

·       Service providers are likely to face demands for improving servce standards from growing numbers of intelligent, educated customers with LTCS.  Many will have reasonable health apart from the LTC, as well as useful life experience.  They could be major assets for the disability sport initiative.

 

Conclusions

4.12 The excess presence of Long Term Conditions in poor areas in West Central Scotland and the social breakdown which often goes with it, require a response which will:

·       Improve conditions for a wide range of people

·       Bring health benefits for different groups

·       Mobilise new resources

·       Leave a long term infrastructure legacy

·       Strengthen community cohesion

·       Build links between health initiativs and other regeneration organisations..

This is a huge task but progress is possible through an initiative based on:

·       Individual and group development

·       Developing consensus around common needs of people with different LTCs

·       Local development and community linkages.

5.   LONG TERM CONDITIONS SCOTTISH PROFILE

 

5.1  Table 1 shows estimated instances of major long term conditions.  Table 2 shows the frequency of people having multiple LTCs.  For example, in Table1, GROS suggest that 45 per thousand of the population have coronary heart disease (CHD), giving a crude estimate of 29817 in Lanarkshire.  Table 2 indicates that 8% of this 29817 (2385) only have that one LTC but that 26% (7753) have CHD plus 1 other LTC and that 67% (19975) have CHD plus 2 or more other LTCs.

 

 

 

 

 

 

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5.2  This leads to the following conclusions:

·       The proportion of people with only 1 LTC varies from 8 % of people with CHD to 48% of people with skin disorders..  Proportions with 1 additional LTC vary from 25% of people with stroke to 31% of people with depression.  Proportions with 2 or more additional LTCs vary from 27% of people with skin disorders to 67% of those with CHD.

·       The high frequency with which people have more than one LTC is striking..  On the basis of this evidence, there is a strong risk that people who experience one LTC will acquire others.

 

5.3  We identified a long list of conditions from the LTCAS membership list and other NHS and voluntary sources.  We also reviewed over 100 websites and formed a list of 7 LTCs for further research  on the following basis:

·       Coronary Heart Disease.  This is one of the most important causes of death in Scotland..  It is strongly linked to sedentary lifestyles.  It therefore poses a particular risk to disabled people.  It has the highest rate of co-morbidity of any LTC, that is people with CHD are most likely to have 1 or more other LTCs in addition to CHD.

·          6 neurological conditions with very different profiles

Autism    Estimates of the number of people with Autism have increased.  There are widely acknowledged difficulties in attracting people with Autism to sport.  The Scottish Government has developed detailed guidelines for commissioning services for people with Autism

 

Cerebral Palsy     People with cerebral palsy are prominent in Paralympic sports where they have their own category.

EpilepsyIt is possible to control symptoms in many cases of epilepsy.  There is a traditional aversion, however, to involving people with epilepsy in strenuous exercise..  This is changing.

Myocardial Encephalitis / Chronic Fatigue SyndromeME and its sub groups are difficult to diagnose properly and there are disagreements about the nature of the disease and the effects of exercise.

Multiple Sclerosis      MS is one of the most common neurological conditions and is often found in people aged 20-40.  People would normally expect to be active during this part of their lives.

Parkinson's disease.   There is very high public awareness of PD, partly because of publicity about famous people with the condition.  Drugs can control symptoms quite effectively but many people fear that exercise will compromise the drugs' effectiveness.

 

We also reviewed the websites of professional organisations who have joined LTCAS.  We excluded sites which emphasise spirituality or complementary medicine.

 

5.4  These 7 were chosen on the following basis:

·       There is long-standing and unequivocal support for exercise as a means of reducing heart disease, both before the event and in preventing repetition

·       The other 6 conditions are far less frequent than CHD.  There has, however, been some professional discussion about the usefulness of exercise in lessening the effects of each of them.  In each case,  UK or Scottish representative bodies and others with strong and credible links to people with the disease have expressed a view on the effects of exercise.

 

 

 

6.   THE CASE FOR EXERCISE

 

6.1  The Harvard publication 'Boosting Your Energy' argues that for healthy individuals, moderate exercise increases the body's fuel-making capacity by helping formation of more mitochondria in muscle cells, so producing more energy to burn.  Exercise also creates more capillaries which take oxygen to cells.  Exercise also increases the amount of deep sleep, the type of sleep which restores energy.  Finally, exercise raises pain thresholds by releasing endogenous opioids and growth factors (9).

 

6.2  Wise (10) stresses the strong policy backing for encouraging activity as a way of improving health.  Relative risk measures the relation between being active or inactive and health outcomes.  Examples quoted include:

·       CHD – risk among the sedentary is about twice the level among the active

·       12% of breast cancer risk is attributable to inactivity

·       15% of stroke risk is attributable to inactivity

·       1​3% of colon cancer and diabetes deaths are attributable to inactivity.

 

Resistance to Exercise.  Researchers on disability express surprise and frustration at the low proportion of people who take exercise and the even lower numbers who take vigorous exercise or participate in competitive settings.

6.3  There are many reasons for this but 3 in particular are worth discussing here.

Fear of Heart Attack.  Almost every piece of publicity promoting exercise tells middle aged and elderly people to consult their GP before starting a course of exercise.  People imply from this that there is significant risk of exercise causing a heart attack.  In reality, this risk is very low.  The British Heart Foundation states:

'Physical activity has both risks and benefits, therefore the objective for the healthcare professional is to provide guidelines that minimise risks and maximise benefits.  The absolute risk of sudden death during and up to 30 minutes after vigorous activity is extremely low, even in individuals with cardiac disease  (1 sudden death per 1.51 million episodes of physical exertion).  Therefore, it is generally believed that the benefits of regular moderate-to-vigorous intensity physical activity far outweigh the risks except in those with the following conditions  (List of 14 specific conditions). (11)

 

Inadequate Facilities and Support    Councils and others have invested substantial resources in improving disabled access to sports and community facilities.  However, disabled use of many buildings is limited by 3 factors:

·       Building design     Even after conversion, many building have multiple levels, tight corners and corridors and inadequate storage or manoeuvring space for hoists and other equipment

·       Staff training for working with disabled people may be inadequate

·       Management may place low priority on developing disabled use.

These and similar problems are being addressed in England by the Inclusive Fitness Initiative.  There is no current Scottish equivalent of the IFI but it offers a template for addressing this problem by taking action on design, equipment and staff training.  It works closely with both public and private leisure facility operators.

Risk Aversion  Discussions with people with a range of disabilities reveal a number of consistent points. Overt malice sometimes emerges in the wider population towards disabled people but it is not common.  More common is an exaggerated protectiveness which can turn into resentment if the disabled person is thought to be taking unnecessary risks.  Friends and family often fear that the disabled person will 'overexert' themselves and be unable to cope with failure.

Popular attitudes tend to place specific disabled people  at the extremes of a scale which runs from admiration through confusion to hostility.  The 'Douglas Bader/ Christopher Reeve' syndrome involves disabilities with no stigma, quiet bravery, good deeds and stoicism. This is admirable but it offers no challenge to conventional thinking about the status of disabled people. The 'Ian Dury' stereotype is located at the other end of the scale.  Flamboyant and extreme behaviour, and a refusal to apologise for personal weaknesses are likely to cause unease, more so if accompanied by stigmatised conditions such as sexually transmitted disease or mental illness.

 

 

7.   CORONARY HEART DISEASE

 

7.1  The American Heart Association (12) states:  'During the past 5 decades, numerous studies have demonstrated a reduced rate of initial CHD events in physically active people.' ...As little as 30 minutes per week of strength training may reduce the risk of an initial coronary event. '

 

7.2  There are limits to the data on the effect of exercise on repeat coronary events.  People who survive CHD typically take a range of drugs and it is difficult to isolate the effect of exercise from the effect of medication.  However, there appears to be a consensus that endurance training is associated with reductions in a number of indicators of risk, These include the condition of arteries and weight loss.  It also reduces demands on the heart while increasing its capacity.

 

7.3  The British Heart Foundation takes a pragmatic position on exercise and CHD:

'Although regular vigorous physical activity confers maximum cardiovascular benefit, it is apparent that this level of activity is unattainable and unlikely to be sustainable for the majority of the population. However, a number of studies have shown that moderate intensity physical activity benefits cardiovascular health.'

It sets out a number of combinations of light and moderate intensity exercise which will bring benefits in reducing probability of CHD and other diseases.  Finally, it quotes the English Department of Health:

'There are few public health initiatives that have greater potential for improving health and well-being than increasing the activity levels of the population. Being active is no longer simply an option; it is essential if people are to live healthy and fulfilling lives into old age. (13'

 

7.4  BHF also stresses the importance of exercise in cardiac rehabilitation programmes.  Writing in 2005, it states:

'The most recent Cochrane review of 48 randomized controlled trials found that CR caused a 20% reduction in all cause mortality and a 26% reduction in cardiac mortality at 2-5 years2....Although mortality benefits did not differ between predominantly exercise-based programmes and those claiming to be more comprehensive,many patients with CHD experience substantial psychological morbidity leading to a reduced quality of life.  Exercise alone is not sufficient to reduce these problems and, like all other forms of rehabilitation,psychological and social needs should be assessed and, where necessary, attended to. '  (14)

7.5  The BHF has a huge output of publications., aimed at both public and health professionals.  They stress the importance of exercise but there is a thread of pessimism about the likely spread of intense physical exercise

8.   OTHER LONG TERM CONDITIONS

Autism

8.1  Autism is a complex developmental disability involving a biological or organic defect in the functioning of the brain.  Its effect is lifelong and it affects the way a person communicates and relates to people around them.  Children with autism have a 'triad of impairments', -  in social interaction, social communication and social imagination.  People with autism often have high anxiety levels, a resistance to change and obsessions with particular objects or topics.  Some children with autism may also have accompanying learning disabilities.  Autism affects different people in different ways and difficulties and behaviour can vary dramatically.  For this reason, it is often called Autistic Spectrum Disorder (ASD).  The Scottish Government estimates that around 50,000 people in Scotland have ASD, about 40% of whom have learning disability (13).

 

8.2  Most people with ASD have poor motor coordination.  This can be improved through movement therapy or exercise.  Many athletic pursuits require strength and endurance rather than coordination.  In addition, the intense focus and adherence to routine common to those with ASD ensures that some people with ASD are well suited to some sports.  However, even more than other people, those with ASD will only engage willingly in sport on their own terms.  They also tend to prefer individual sports rather than team sports (14).

 

8.3  O'Connor, French and Henderson (15) argue that following moderate exercise, children with ASD improve attention span, focus and behaviour as well as improving fitness.  They recognise that noise, change of routine and other factors may make it difficult to introduce children with ASD to sport but they argue that the likely long term benefits make this worth while.  They stress that it is vital to integrate sports and exercise with strategies to manage behaviour.

 

8.4  Chessen (16) makes a number of crucial points:

·       Children do not 'naturally' know how to move.  Agility, strength, balance, coordination, speed and endurance are acquired through exercise and instruction.  Children with ASD may have underlying problems in gait and other indicators of lack of fitness but, like other children, these will be worsened by a sedentary lifestyle.

·       Sports and fitness are different things.  Serious endeavour in one type of sport may not generate equivalent improvements in general fitness.  To some extent, pursuit of general fitness may hinder high level success in specialist sports.

·       There is little need for specialised equipment or programmes.  However, a fun element is crucial to make exercise acceptable to children with ASD.

 

 

8.5  The conclusion is that, offered an appropriate sport with a strong training routine and a behaviour strategy, there is a good chance that people with ASD will become interested, stay interested and derive benefits from participating.

Cerebral Palsy

8.6  Cerebral Palsy  (CP) encompasses a group of motor conditions that cause developmental problems in various areas of body movement.  CP is caused by damage to the motor control centres of the developing brain.  This can occur during pregnancy, during childbirth or up to about age 3 years.  The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by musculoskeletal problems  (17).

 

8.7  Involving people with CP in sport and exercise helps them to improve their mobility and muscle control.  Considerable imagination has been invested in helping people with CP with limited mobility and severe multiple impairments to overcome the barriers to participation.  However, there does seem to be a shortage of systematic comparisons to establish the most effective forms of exercise (18).

 

8.8  There is considerable interest in CP involvement in sport.  In Scotland, this largely concentrates on swimming and football.  In England there is also large scale support for CP involvement in golf, bowls, boccia and athletics.

 

Myocardial Encephalitis / Chronic Fatigue Syndrome.

8.9  CFS is the common American description for ME.  There are a number of different sub groups within this.  There is disagreement on the subgroup definitions, on causes and the extent to which these are related.  Two leading researchers quote approvingly the question in one journal: '...Is it a ragbag of common non-specific symptoms with many causes, mistakenly labelled as a syndrome?' (19)  This is important for many reasons.  For example, if the nature of the sub groups varies considerably, appropriate treatments may be radically different.

 

 

8.10 There is no professional consensus on the nature of the disease.  This makes it difficult to establish agreement on reasonable hypotheses or on how they should be tested.  There have been few large-scale patient surveys on exercise and they have produced mixed results.  Two studies covering a total of over 3000 ME patients found that graded aerobic exercise made more people feel worse than any other (20).  However Fulcher and White (21,22) compared graded aerobic exercise to flexibility and relaxation training.  Far more patients in the exercise group appeared to benefit than in the relaxation group (52% compared to 27%).  This and other studies have reported high drop-out rates, suggesting that some or all activity based therapies for people with ME may be fundamentally unpopular.

 

8.11 Some studies suggest that people in some ME sub groups react differently to exercise than healthy people.  For example, Whiteside et al found that pain thresholds were lowered in people with CFS after moderate exercise, the opposite of the effect found in healthy people (23).

 

8.12 Pinching (24) has attempted to identify the areas of agreement.  He argues that graded exercise can benefit people with mild to moderate ME.  Where this does not occur, Pinching thinks that the exercise may not be supervised, staff may not be adequately trained or the exercise programme may not follow recommended approaches.  Exercise programmes should start from the patient's own capabilities.  Where progression leads to an adverse reaction, the therapist should reduce exercise intensity until the condition stabilises and then increase it again.  Fitness can be lost quickly, so it is important that a comfortable level of activity is maintained even during a setback period.  He argues that other broad requirements for success include:

·       A preference for small and slow improvements

·       A realistic timescale to achieve substantial results

·       The patient should have confidence and knowledge to allow them to challenge and negotiate starting levels and rates of progress.

8.13 There are a number of problems with this.  First some of the underlying assumptions are not clear or fully agreed (for example definitions of 'early' and 'advanced' ME).  Second, there is some circularity in the argument.  For example, NICE (25) identifies a specific pattern of post exercise fatigue as a key factor in diagnosis of ME. but this does not seem to be based on any systematic observations or any model of the underlying physiology.

 

Finally, the debate has generated psycho-social content which is not easily defined or tested and which would probably not be acceptable in discussing other diseases.  Other key points are:

·       Few studies have moved from observation of the effects of exercise to investigating the underlying physiology.

·       The Herald newspaper and the charity ME Research UK have begun a campaign to establish a Scottish Centre of Excellence for ME..  The promotional material makes no reference to disagreements about the nature of the illness.

 

8.14 M E Research UK states:

'Since the underlying causes of the  illness remain unresolved and no treatment exists, prescriptions are given for particular symptoms such as chronic back pain or sleep problems.' (26)

 

Conclusions

8.15 In the absence of a consensus about the nature of ME or about its response to exercise, it is safer not to recommend people with ME to take exercise.

 

Multiple Sclerosis

8.16 Multiple sclerosis (MS) is the most common neurological condition among young adults in the UK, affecting an estimated 100,000 people.  In Scotland it is estimated that there are around 10,500 people with MS – more per capita than anywhere else in the world.  It is possible for MS to occur at any age but people are most commonly diagnosed between the ages of 20 and 40.  Women are two to three times as likely to develop MS as men. (26)

 

8.17 MS is a condition of the central nervous system (the brain and spinal cord), which controls the body's actions and activities.  Each nerve fibre in the central nervous system is surrounded by a substance called myelin.  Myelin helps the messages from the brain travel quickly and smoothly to the rest of the body.  In MS, the myelin becomes damaged, disrupting the transfer of these messages (27).

 

8.18 MS is unpredictable and symptoms occur randomly.  Common symptoms are problems with mobility and balance, pain, fatigue and muscle spasms.  The exact cause of the fatigue is not known and the incidence and severity of fatigue varies from person to person.  Treatments include drugs, physiotherapy and exercise.  The individual usually develops a good understanding of what works best for him or her.

 

 

8.19 Fatigue in MS can be episodic or constant.  It can be worsened by lack of sleep, infection, too much caffeine and the side effects of medication.  Other symptoms include muscle weakness, stiffness, pain, tremor, poor eyesight and depression.  Weakness may affect one side more than the other.

 

8.20 Exercise generates benefits to overall health.  A number of studies have shown that exercise can bring benefits for people with MS.  These have included  better cardiovascular fitness, improved strength, better bladder and bowel function, less fatigue and depression, a more positive attitude, and increased participation in social activities..  However, there is some argument about the most effective forms of exercise (28, 29).

 

Attitudes

8.21 Exercise programmes can also offset some of the symptoms of MS. Brown (30) argues: 'Drugs can help control the progression of the disease or help alleviate symptoms, but they do not improve function.  For this, rehabilitation is the best treatment yet.  However, it is very important that therapy includes an individualised exercise programme for use at home..'

 

8.22 His key points are:

·       Individuality.  Each person with MS has a unique combination of exercise needs.  These stem both from MS factors and from non-MS factors such as pre-existing fitness, age and gender.  In-depth interviewing is essential to establish the patient's needs and preferences.

·       Specificity   Most of the benefits of the exercise programme will go to alleviating MS symptoms.  There will be only limited carry-over to general fitness.

·       Moderate Intensity  There are good reasons to avoid vigorous exercise in MS.  First, most patients with MS are de-conditioned.  For them, there are safety issues, the experience will be uncomfortable and there is a strong likelihood of dropping out of the programme.  Some programmes seem to cause reductions in fatigue levels, while others have shown no change.  However, no study has found evidence of exercise actually making fatigue levels worse.  Without exercise, the capacity for physical activity will gradually decline., so there is effectively no alternative to exercise. Again, the key is exercise in moderation with a very gradual ramping up of exercise activity over a period of months.

·       Sustainability     The effect of the programme will wear off if it is not sustained.

·       Exercise for Severely Disabled People     A person with severe disability will receive less physical exercise through activities of daily living than his or her more able-bodied counterpart.  De-conditioning and problems of restricted range of motion, bone demineralization, pain, spasticity, fatigue, and depression are more likely.  Exercise is more important to this group of MS patients than to any other.  Safety issues such as risk of falling need to be resolved.

 

8.23 There is no evidence that exercise will worsen MS in any way  (31).  Possible benefits include:

·       Improving overall health

·       Improving mobility                         

·       Helping some people manage some of the symptoms of MS

·       Decreasing the likelihood of heart disease.

 

Some specific benefits are:

·       Lessening muscle de conditioning

·       Control of weight

·       Reduced likelihood of osteoporosis. (32)

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The MS Society makes a strong and detailed case for vigorous exercise linking this to the role of physiotherapists and the need to modify activities as the condition changes..The positive nature of the MS Society's` literature contrasts strongly with the passive and ambivalent tone of many other organisations' advice.

 

Conclusion

8.24  The unpredictability of MS makes it difficult to expect large scale involvement in team sports.  However, there seems to be nothing to prevent people with MS participating as individuals in track & field events.  Other possibilities include training with teams who play at an appropriate level (e.g. junior league football teams) or formation of buddy groups which can provide support and a degree of competition.

 

Epilepsy

8.25 When nerve cells in the brain fire electrical impulses at a rate of up to four times higher than normal, this causes a seizure. A pattern of repeated seizures is referred to as epilepsy.  This is most common in children and people over 65 but anyone can develop the condition.  There are over 40 forms of epilepsy and a wide range of causes. including head injuries, brain tumours, lead poisoning, maldevelopment of the brain, genetic and infectious illnesses.  In at least half of cases, no cause can be found.  Medication controls seizures for the majority of patients. (33).

 

8.26 Traditionally people with epilepsy were discouraged from taking part in sport but this attitude is now rare. they can take part in most activities.  This requires qualified supervision and relevant safety precautions.  Many people with epilepsy have their seizures completely controlled by drugs and do not need to take any greater safety precautions than anyone else.  Active people with epilepsy are generally less likely to have seizures, though there is a small group for whom exercise can make seizures more likely (34).  This is usually due to over-exertion.  Taking up exercise or sport for the first time, or after a long period of inactivity, can affect body weight and metabolism which in turn could affect seizure control.  Overall, the evidence seems to show that sport can be of real benefit for most people with epilepsy,

 

8.27  The National Society for Epilepsy endorses both moderate and vigorous exercise (34).  It describes the general health benefits which exercise can bring.  It encourages participation in contact sport despite the possibility of head injury..  It gives prominent position to a review of a Norwegian experiment where 15 women undertook vigorous exercise for 60 minutes twice a week for 15 weeks and reported large reductions in seizures plus other health improvem

8.28 Perhaps the most exercise-positive site of all those that we reviewed is Epilepsy Action's (www.epilepsy.org.uk).  It makes a sensible but very low-key recommendation to people with epilepsy to check with a doctor before they start exercise.  It then encourages participation in a wide range of sports, including contact sports and climbing.  It offers safety advice, related both to the sport and to the individual's history, generally treating readers as intelligent and knowledgeable about their condition.  Even more impressively, it offers references to sources for its advice and relays helpful discussion threads from its own and other sites.. Much of the discussion is quite hostile to arrogant doctors.  By refusing to edit out member's frustrations, it remains useful and credible.

 

Parkinson's Disease

8.29 Parkinson's Disease (PD) makes up around 80% of a wider group of conditions known as Parkinsonism.  It stems from insufficient formation of the chemical messenger Dopamine in the Substantia Nigra.  Symptoms include muscle rigidity, tremor and  slowing of physical movement.  Spech and other functions may be affected.  There is currently no cure.  Drugs, especially Levodopa, can lessen the symptoms but their effectiveness tends to decrease over time.

 

8.30 Some symptoms (e.g. short steps, rigidity) are similar to those found in non-PD older people.  PD exercise programmes often concentrate on developing strength and flexibility and can bring significant improvements in walking speed, stride length and ability to undertake everyday activities.  However, further improvements seem to be possible from neurological and rehabilitation strategies such as using visual and sound signals to improve stride length and `speed.  Such improvements seem to last longer than those from the more traditional forms of exercise (34).  At least 1 US trainer suggests that the centreal effect of moderate intensity exercise is to increase the amount of dopamine generated by the brain.

 

8.31 Physically active people with PD seem to live longer, have better quality of life and function more effectively than the inactive.  However, resistance to exercise is common among people with PD.  This often stems from concern that exercise will reduce the effectiveness of drugs or that reduced endurance or slower reaction times will prevent participationg. In fact, people with mild to moderate PD have capacity for exercise largely similar to healthy people, as loing as exercise sessons are short..  Levodopa absorption is not greatly affected by exercise if it starts more than an hour after the drug is taken (35).  Most people with PD are over 50 at diagnosis, so issues such as risk of fracture need to be taken into account.

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8.32 Without attempting to list every drug used to treat PD there are some issues which may affect participation in sport:

·       Dyskenesia (involuntary limb movements)

·       Pain and cramp

·       Dizziness and low blood pressure

·       Equipment for sub-cutaneous deliuvery of APO-morphine can easily be damaged.

 

Some drugs can modify behaviour.  This can include:

·       Increased propensityt to take risks (e.g. Gambling)

·       Hyper-sexuality

·       Aggression

8.33 Clearly people with PD will not provide a large pool of Olympic-class athletes but with appropriate support and an awareness of patterns of fatigue, there is scope for increasaing participation in:

·       Bowling

·       Curling

·       Hiking and hillwalking

·       Nordic walking

·       Swimmning (subject to safety isues about cramp).

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Conclusions

8.34 Subject to indiuvidual circxumstances and to medical advice, there seem to be potential benefits from sport or exercise for people with:

·       Autism

·       Cerebral Palsy

·       Multiple sclerosis

·       Parkinson's Disease.

 

At least one form óf Epilepsy seems  to respond badfly to exercise.  There appears to be no consensus about the nature of ME, its treatment or its response to exercise.