Creating a fairer Britain
The Equality Act came into force on 1 October 2010. Some of the information on this page may be out of date.
Good communication is essential to effective care and is particularly important to disabled people as poor communication can often lead to disabled people missing essential appointments and therefore treatment. It is very important to establish and accommodate a patient’s preferred means of communication. There are comments on the following sections of the GMC's guidance:
For disabled people this often means respecting their experience of their disability, and, not making assumptions based around it. For example, a person with a newly diagnosed condition which is also a disability will have many non medical issues to deal with. Listening to their feelings and pointing them in the right direction for peer support and advice may be just as important as prescribing treatments, particularly if the impairment is a permanent condition. Perhaps one of the biggest fears is losing their job which highlights the need for doctors and health services to link up and be aware of employment support services for disabled people.
When a disabled person uses a service such as A&E ensure that they are being listened to and consulted. For example, someone with autism may display behaviours due to the pain they are in and so need diagnosis. It is sometimes evident that the behaviour is simply attributed to their disability and necessary treatment is not provided. This is known as ‘diagnostic overshadowing’ and it may result in non-treatment of the real condition causing the pain.
Sometimes patients are not listened to because they have a mental health problem and it is assumed that they are seeking attention or not being truthful. Such assumptions are potentially discriminatory and unlawful. Additionally some impairments are incorrectly assumed, for example some deafblind patients have been assessed to have a mental health problem or learning disability because their communication needs have not been understood.
Often the disabled patient is an expert in their condition. They can be encouraged to explain how it affects them. They can be further encouraged to use this expertise, for example how they might participate in local support groups to assist others, particularly those experiencing the issues for the first time.
If disabled people join local ‘Expert Patient’ Programmes this is a further way to refine and channel their acquired knowledge.
If information is being communicated face to face then care should be taken to ensure its sensitivity and accessibility.
Language should avoid terms like ‘handicap’ or deformity etc. The term impairment should be used in place of disabilities. If someone is newly disabled, they might not be ready to deal with this, but they should at least be informed that if they are covered by the DDA they have quite substantial rights at work, and in the provision of services.
The language should be clear and simple but not patronising. If a doctor is finding it difficult to understand, or to be understood it is best practice to be honest about this to disabled people. This shows respect, and the disabled patient is usually the best guide for what is needed to overcome communication barriers.
Written communication should also be accessible. It is now generally understood that any information provided to patients should be accessible and available in such formats as large print, Braille, email, audio tape and easy read. Many doctors/health services do not offer these formats as standard but doctors may be legally challenged to provide these. You should be able to get information or assistance in identifying sources of good accessible information from your local commissioning body.
It is also important to realise that some people communicate non verbally and may use story boards or technology such as Makaton to communicate.
At the time someone is first informed about either their own or a family member’s impairment the communication can inadvertently set up a negative cycle, which unintentionally further disables people. To illustrate this:
Firstly, the ‘news’ of an impairment is usually a negative and even traumatic event. To the patient it often means life-changing limitations. To doctors it is the point at which their ability to intervene medically often becomes limited.
Secondly, the patient usually then requires a further stream of verifications of their limitations by the doctor. Sickness notes, confirmations for benefits and statements to support home adaptations, disabled parking badges or even to supply concessions all stress the limitations now faced by the patient.
The long term results of this can be to gradually stigmatize and even isolate the disabled patient. In turn this segregates them, reduces their community participation, jeopardises or finishes their work, massively reduces their income and in time submits them to health inequalities that go with the process of ‘being marginalised’.
Disabled people frequently complain that doctors handle this process with lack of sensitivity, and with lack of ability to sign-post them in the right direction when it really matters; the time of diagnosis.
The doctor who can advise and sign-post the newly disabled patient will ensure that they are less likely to become marginalised.
In more simple terms, the doctor who can support the patient with these wider issues is likely to make the most beneficial impact.
Surveys of disabled people regularly demonstrate that they depend on the whole team to get it right. A disabled patient will often need good cooperation between surgery staff, transport providers, hospital staff and social workers in order to ensure the success of their treatment. An example of this would be the extent to which their access requirements were being shared within and amongst teams.
It is important that the disabled patient understands how the information will be used and has given consent to it being shared with others . Many access requirements ensure safety, dignity and comfort so they are as important as medical information. For example someone with multiple sclerosis will have a range of access requirements at each stage of their patient experience. They should not need to repeat these requirements at every stage.
It is good practice for doctors to consult with patients regarding copying clinical letters to them. However doctors need to provide this information in alternative formats such as Braille, email, audio tape and large print.
Communication is a vital issue for all disabled patients even when they have a support worker/advocate with them. The ability to communicate with many disabled people is often affected by their impairment. It might be as simple as asking how they wish to be communicated with. In some cases it may require the doctor to admit their difficulty and to seek the preference or advice from the patient or the patient’s nominee as to how two way communication can best be supported.
If a disabled patient does have a support worker with them it is very important to communicate directly with the patient unless otherwise informed. For example if a sign language interpreter is present still look at the deaf patient and allow time for translation.
If a patient is using an interpreter doctors should take time asking questions or describing things in order for the interpreter to relay the often complicated information accurately. Deaf patients may need a sign language interpreter if the issues are sensitive or complicated in order for them to understand what is happening even when they normally lip read in everyday situations. However do not assume that all deaf people know BSL or that all blind people can read Braille.
It is particularly important for disabled people to be able to understand how any treatment may affect them. To obtain informed consent or otherwise the doctor needs to have overcome any barriers that prevent the disabled patient from understanding their choices. When doctors are informing patients about their condition, prognosis and treatment options it is important they do this in a clear concise manner, avoiding jargon and complicated terminology. For example if a person has a learning disability they may find it hard to understand medical terminology so the doctor needs to be aware that they may have to spend longer with the patient.
If leaflets are used to describe issues, then these need to be either available in different formats or communicated to the patient in an alternative manner e.g. by being read out. Also, more time should be allowed for the discussion so that the patient does not feel rushed and is able to ask any questions.
Ideally, the patients understanding should be politely assessed. As previously mentioned the Mental Capacity Act starts from the presumption of capacity and tries to enable capacity where possible.