Abstract
Despite often having complex and challenging health problems, people with a disability may have difficulty accessing services to meet their health care and other everyday needs. These problems can be further confounded by negative public attitude and potential discrimination.
The GP curriculum, disability and discrimination
Disability and discrimination are covered in several statements of the GP curriculum.
Treat colleagues, patients, carers and others equitably and with respect
Act in ways that recognize that people are different and not discriminate against people because of those differences
Provide information in ways that help people to exercise their rights
Challenge behaviour that infringes the rights of others
Recognize and take action to address discrimination and oppression in self and others
Act in ways compliant with employer law, disability discrimination legislation and best practice in recruitment; encourage others to do so as well
Interpret people's rights in a way consistent with employer's policies and relevant professional standards
the legal implications of the Disability Discrimination Act 1995 for GPs, including the need for ‘reasonable adjustments’
how to provide communications support, such as British Sign Language/English interpreter or purchasing helpful equipment and putting a prominent reminder on the medical records to alert staff
Disability is an extremely broad umbrella term that encompasses any situation in which an individual is unable to perform everyday activities or is limited in participating in everyday events as a result of a bodily restriction—whether that is physical, cognitive or psychological. Thus, disability is a complex phenomenon, reflecting an interaction between features of a person's body and features of the society in which he or she lives.
This article looks at the access barriers faced by disabled people. It outlines the law about disability and discrimination and its effect on GPs as health service providers and employers. It also explores guidance in place to help tackle disability inequality and promote positive attitudes and equal opportunity for disabled people in every aspect of daily life.
The Disability and Discrimination Act
The Disability and Discrimination Act (DDA) was introduced in 1995 setting down regulations to promote equality and civil rights and reduce discrimination faced by those with a disability as defined by the Act (Box 1). One in five people in the UK with a wide range of long-term conditions that constitute an ongoing disability, such as diabetes, arthritis, visual impairment and Alzheimer's disease, are covered by the DDA.
The DDA protects the rights of disabled individuals in relation to employment, access to goods, facilities and services, property ownership, education and transport. As a whole, the DDA requires all organizations to make reasonable adjustments to ensure that they do not discriminate against a disabled individual while tackling inequality, promoting fairness and including disabled people in policymaking.
In 2005. the scope of the Act was amended and expanded. It now covers individuals suffering from cancer, multiple sclerosis and human immunodeficiency virus (HIV) from the point of diagnosis rather than from when their condition impinges on their ability to perform their activities of daily living. The Act also developed at this time by setting out legislation obliging public authorities to promote disability equality.
Definition of disability and discrimination under the DDA
A mental or physical impairment that has substantial and long-term (at least 12 months) adverse effect on an individual's ability to carry out normal day to day activities.
The Act specifically excludes some conditions such as hay fever but does cover those who have previously suffered with an impairment that meets the criteria.
The DDA makes us aware that disabled individuals and groups can face discrimination in different ways and defines four types:
Direct discrimination
Failure to make reasonable adjustments
Disability-related discrimination
Victimization
The DDA also sets out to promote positive attitudes towards disabled people. Disability can evoke a myriad of emotions in other people, such as pity, contempt, guilt and fear, some of which can have a markedly negative impact on disabled people's lives. As a society, we must work to break down barriers, some born from ignorance, to develop a fair, respectful and undiscriminating society.
Disability Equality Duty
Disability Equality Duty (DED) was introduced as a part of the DDA in 2006. Its aim is to ensure that the public sector addresses disability inequality, eliminates discrimination and promotes inclusion of disabled people in policy development and positive attitudes towards disabled people.
DED has had a marked impact on health sector public authorities, including Primary Care Trusts (but not individual GP surgeries), Strategic Health Authorities, Foundation Trusts and Local Health Boards. It builds on guidance outlined in the original 1995 DDA, which tackled some of the more physical elements of inequality such as implementing ramps to access public buildings. It obliges the public sector to adopt a proactive approach, seeking out potential problems, incorporating the needs of disabled people into service provision and planning and encouraging participation by disabled people in public life. The DED focuses on the social model of disability, which asserts that many of the barriers faced by disabled people are social rather than related to the actual limitations that the person has.
Specific duties are outlined by the DED that need to be carried out by the public health sector. These include publication of a Disability Equality Scheme (DES) that must be regularly reviewed and should demonstrate that organizations are working towards improving health equality through needs assessment, policymaking and implementation to tackle discrimination and support independent living.
Case study 1
Paula is 34 years old. She was born with spina bifida and has never walked.
No, it never has, although I do think that I have to work harder to prove that I can do something as well as an able-bodied person. I can do most things with a bit of lateral thinking. I am even going skiing this year.
Job hunting after University was an interesting experience. I was turned down for hundreds of jobs. There was always an excuse but I knew it was because I was in a wheelchair. Eventually, I got a job with the bank and I have been there for more than 15 years now.
Generally it has been excellent. The GP surgery is much easier for me to access now than it was when I was younger. A ramp has been installed and an electric door, which means that I can just park the car in the disabled bay, get in my wheelchair and go straight in. The reception staff know me well, and if I ring for a repeat prescription or an appointment, there is never any problem.
I occasionally do have problems when I go to the hospital though. Last time I went, a very young doctor asked my mum to bring me in. My mum said that I was quite capable of coming in on my own, but he said that he might need her help. I am not sure what he thought I might do to him. When we were in the consulting room, he asked my mum how I had been and then started talking to her about what could be done about my bladder problem. It is my bladder problem and I have to live with it and manage it—why didn't he talk to me? It was as if I was not even there which I think was disrespectful.
Other relevant legislation
The Equality Bill, 2009
The Equality Bill is designed to harmonize discrimination law replacing all existing equality legislation on disability. The Bill is likely to gain Royal Assent in spring 2010 and come into force in autumn 2010.
The Human Rights Act, 2000
Equality is a core principle of human rights. Article 14 of the Human Rights Act is the right not to be discriminated against, on any grounds. The Act serves to strengthen and expand other equality legislation.
Building Regulations
The Building Regulations exist to ensure the health and safety of people in and around all types of buildings; Part M deals with access and facilities for disabled people. All new public buildings, and alterations to existing buildings, must be accessible to and useable by anyone, including those with disabilities. This applies to GP premises.
The Commission for Equality and Human Rights
The Commission for Equality and Human Rights, and previously the Disability Rights Commission, helps to legally enforce the duties that public authorities must comply with. It also makes people aware of their rights, supports those who have had their rights in relation to their disability breached and works with policymakers, lawyers and the government to make sure that social policy and the law promote equality.
GPs as primary health care service providers
Access to health care is a civil right. It is unacceptable and unlawful for disabled people, often with complex and serious medical needs, to be denied this because of physical or logistical barriers. GPs and their practices must comply with legislation and work towards providing accessible high-quality health care for the disabled. The Primary Care Trust with which the GP surgery has a contract can scrutinize its practice even though GPs are independent service providers.
Under the terms of the DDA, practices must
not refuse to take disabled people onto a practice list
not provide a lower standard of service as a consequence of a person's disability
make reasonable adjustments to their premises and the way they deliver their services so that disabled people can use them
Assessment of service provision
It is important as health care providers that GP practices assess the service that they offer to their disabled patients on a regular basis (Box 2). This review should encompass not only access to the surgery but also the ability to have an effective consultation and to obtain effective treatment from the practice. Ideally, this should be done by consulting local disability groups and fora, disabled service users and practice staff about any difficulties, or potential difficulties, that they have identified and suggested solutions. It is better to do this proactively rather than waiting until a problem becomes apparent.
Considerations in effective primary health care consultation
Consider:
Online/textphone booking
Curbs/access to the surgery from the road
Availability of parking and proximity of disabled bays to the surgery
Easily opened/electric door
Room for wheelchairs in the waiting room
Level of reception counter/automated booking-in system
Alert in patients' notes of any communication difficulties
Display board to announce the next appointment
Flooring
Handrails
Toilets
Ground floor consulting and treatment rooms with wide enough doors
Communication barriers
Extra time for examination/undressing
Patient information leaflets available in different formats
Not addressing barriers to effective health care not only discriminates against those with disability but can also lead to reluctance to access primary care services. This has medical consequences as it may result in more serious illness for the patient. It may also have a knock-on effect on the patient's ability to maintain employment or to be actively involved in home and family life.
Addressing barriers to effective care
Physical barriers to access to GP premises may require redesign of all or a part of the surgery. However, not all barriers are expensive or even difficult to remove. Many barriers can be removed simply by increasing staff awareness, for example, by booking longer appointments for disabled patients with mobility difficulties who might take longer to get into and out of the consulting room.
For health equity to be achieved, as a GP seeing disabled patients, it is important not to be less thorough than you normally would be because of a patient's disability. If a patient has communication difficulties, it may be necessary to explore different methods of communication to evaluate a patient's symptoms, for example, a simple pictorial scale on which the patient can indicate the level of pain being experienced by pointing at the appropriate point on the scale may be an effective way to evaluate pain. Physical examination should not be omitted simply because of time constraints or difficulties exposing the area to be examined.
It is also important to practise holistic care and assess every facet of a patient's problem. For example, it may be difficult to assess depression in a patient with dementia, yet depression is known to be common in this group. Specialized assessment tools may be available for these circumstances. Team working is very important in this respect. Most disabled people have input from several members of the primary care team and many also have input from other health and social care professionals such as physiotherapists, social workers and secondary care consultants. Good communication between team members is essential to ensure a comprehensive and seamless package of all-round care.
Although many disabled people are financially independent, some disabled people suffer financial hardship as a result of their disabilities. GPs and GP surgeries have a vital role in signposting disabled individuals towards applying for benefits available to them, such as Disability Living Allowance, Attendance Allowance or help with health care costs.
Assessing whether a patient is disabled
At what point does a person become disabled? Many people who qualify as being disabled under the DDA do not consider themselves as such. What is the role of the GP in this process? Being defined as ‘disabled’ is only useful for a patient if that assists the patient, and a label of being ‘disabled’ can often have the reverse effect and restrict what patients are allowed to do or thought capable of doing.
GPs have a role in providing general practice services for patients. This includes everyday routine care as well as care specific to the individual patient's problems. GP care with respect to disability includes making a diagnosis of the cause of the patient's limitations and providing treatment and ongoing support in order that the patient (and his or her family and carers) can best manage those limitations. This should happen regardless of what the patient's limitations are or how severe they are. In general, it is perhaps better for GPs to look at patients' abilities rather than disabilities. What is the patient able to do? How can the patient or carers get around problems?
However, on occasions, supporting patients may entail signposting to other sources of support, including benefits or other services for disabled people. The eligibility criteria for these benefits and services will define whether the person is deemed disabled, but the label ‘disabled’ under these circumstances applies specifically and only for that particular purpose.
An example of a situation in which a GP is asked to assess disability is the Blue Badge Scheme. Patients apply for a Blue Badge via their local authority and then the GP is sent a form to fill in to confirm the patient's disability and thus eligibility for a Blue Badge. The definition of disability for the purposes of a Blue Badge application is very narrow (Box 3) and many people classified as ‘disabled’ using the definition provided by the DDA do not qualify for a Blue Badge.
The Blue Badge Scheme
Any person can apply for a Blue Badge if he or she is registered blind, has significant upper limb disability (drivers only) or a permanent and substantial difficulty walking.
In most circumstances the disabled person does not have to be the driver. The badge should not be used if the disabled person is not in the car. Blue Badges entitle the holders to
Park in specified disabled spaces
Park free of charge or without time limit at parking meters or other places where waiting is limited or
Park on single yellow lines for up to 3 hours (no time limit in Scotland)
A map of parking places where the blue badge scheme applies can be found at website: www.direct.gov.uk/bluebadgemap. Further information about the scheme can be found on website: www.dft.gov.uk.
GPs as employers
As employers, GPs' practices must promote disability equality with respect to recruitment. While having the same employment rights as other employees, disabled individuals are also provided for by the DDA and it is unlawful for a disabled employee to be discriminated against at work for a reason directly related to disability.
Case study 2
Alice is aged 8. She was born with a rare hip abnormality and severe learning difficulty. She has difficulty walking although she does mobilize with a frame. Alice's mother answered some questions for a member of the InnovAiT team.
I am happy with Alice's GP. She is lovely and knows Alice very well. However, I am not very happy with the surgery as a whole.
First, access is a problem. There is only one disabled bay and it is always full, so I have to park miles away. That means that we have to take Alice's wheelchair as she cannot walk that far. Then we cannot get through the door. There is a step up to the door, which means that I have to drag the wheelchair up backwards, but the door opens outwards, and once I have got the wheelchair up the step, there is no room to open the door. I have to remember to open the door first and then hold it open with my foot while I drag the chair onto the step.
Once we are inside, we have to wait in reception as there is not enough room in the waiting room for the wheelchair. That means that we do not always hear when we are called for our appointment. The receptionist usually remembers to call us, but we have sat there for hours on occasions only to find out that our appointment has come and gone while we have been sitting there.
Finally, we have had problems with consulting rooms. The surgery is on two floors with no lift. If we are seeing the GP upstairs, the GP is supposed to come downstairs to see us, but three times now there has been no room free downstairs and we have seen the GP in the corner of the reception area which I do not think is good enough.
No, no one has ever asked me. I did write a letter of complaint once, but I felt that made me look like a troublemaker, and that affected the medical care that Alice was getting. I got a very half-hearted response that did not say anything would be changed, but I did not pursue it.
This includes making reasonable adjustments to the workplace (Box 4). This does not only apply to employees who are disabled when they are employed but it also applies to applicants for a position with an employer and employees who become disabled while working for an organization. For example, it may be necessary to adapt the application process for a disabled person to apply for a job or to make reasonable adjustments for an employee to continue his or her own job after an accident that resulted in an ongoing disability.
A needs assessment should be carried out for every disabled employee (or potential employee) exploring potential barriers that may prevent the employee from carrying out his or her job effectively. The employer must ensure that assumptions are not made about an employee's needs and that the disabled employee is fully engaged in any plans for modifications necessary. The needs of disabled people are specific to the individual to carry out a specific job at a specific time, and needs may evolve over time.
There may be funding available for disabled employees to enable adjustments to be made to their working environments. Access to Work is a nationwide scheme run by regional Jobcentre Plus offices in order to assist individual disabled people financially to enable them to carry out a specific job. It involves assessment of the work place by an independent disability adviser and considers every application on an individual basis. There may be scope for assistance with aids and equipment, personal help or even building modifications. The funding is for the individual and not directly for the GP surgery.
GPs' practices should ensure that they are sympathetic towards the needs of disabled employees who may face ignorance and loneliness in the workplace. Where possible view making changes to the GP surgery for an employee with a disability not as a burden but as taking a proactive approach to promoting equality and creating a more inclusive and harmonious workplace.
Disabled doctors
Disabled employees may also include disabled doctors. Since October 2004, qualification bodies have fallen under the remit of the DDA. This ensures that the General Medical Council and Royal Colleges do not discriminate against disabled doctors.
‘Reasonable adjustments’ that may be necessary under the DDA when employing a disabled individual (the list is not exhaustive)
Application form in accessible format
Flexibility in time of and length of interview and accessible interview room
Doors/flooring/handrails/ramps
May need to fit around transport arrangements
Screen magnification/ergonomic mouse/keyboard
Each Royal College sets specific competence levels and entry requirements for specialist training programmes and postgraduate examinations. While a disabled doctor must fulfil these, reasonable adjustments can be requested, for example, accessible examination halls or extra examination time to allow for the use of low vision aids.
Within the GP surgery, it is important that practices accept that doctors can have disabilities too and provide reasonable adjustments and training to accommodate disabled doctors at all levels of training. This may include changes in working practices or modification of the working environment, for example, alterations to the level of examination couches or larger display sphygmomanometers.
Conclusion
Disability affects a significant proportion of society and the patient population. The Disability Discrimination Act promotes enforceable rights for disabled people to access all aspects of daily life without facing negative attitudes and discrimination. GPs have a responsibility as service providers, health care professionals, employers and members of society to promote disability equality and tackle discrimination.
Footnotes
Acknowledgements
The case studies in this article are based on real stories but names, diagnoses and other personal details have been changed to maintain anonymity. We would like to thank the individuals who chose to share their experiences with us.