Welcoming a patient with Intellectual Disabilities into General Practice: Reasonable Adjustments in Primary Care
An examination of reasonable adjustments in order to reduce health inequalities for people with learning disabilities. Although written in the context of the UK, the principles expressed are valid internationally.
Dr Ella Baines (UK)
The Department of Health has produced guidance to ensure mainstream health services are responsible for meeting the health needs of people with intellectual disabilities. One of the areas identified as paramount to reduce the health inequalities experienced by people with intellectual disabilities is the concept of ‘reasonable adjustments’ in the provision of care. General Practice is now often the first port of call for people with intellectual disabilities experiencing health problems. It is, therefore, important for us to look at the barriers which may prevent access to healthcare and ways of reducing health inequalities.
What are reasonable adjustments?
The Disability Discrimination Acts of 1994 and 2005 have set out clear guidance to all healthcare providers on how to take steps to ensure that people with intellectual disabilities are treated equitably. In practical terms, this means we should all be making small changes to our practice to allow fair access and treatment to people with intellectual disabilities and other groups who may require extra help. This includes reasonable adjustments to premises, policies and services. Public bodies are now responsible for providing a Disability Equity Scheme (more details of this can be found in the Equality Act 2010).
Mencap’s ‘Getting it Right’ campaign was developed with health care professionals and the Royal Colleges. The charter sets out nine key activities for healthcare professionals to ensure everyone is able to access healthcare. Reasonable adjustments to the clinical environment include ramps to allow access for those in wheelchairs, suitable waiting areas and ‘changing places’ facilities (ie. Fully accessible toilets with enough room and adequate equipment to change an adult with complex needs).
Other reasonable adjustments, including documentation, communication, joint decision-making and processes are discussed below.
Having a practice register of patients with intellectual disabilities has several benefits. Locally agreed clinical codes can be used to identify those patients with additional needs. Accurate coding is important as it improves information sharing between professionals involved in care e.g. on referral letters or Disability Living Allowance reports. It also allows easier auditing of the service for people with intellectual disabilities.
A register enables staff to identify those patients who may need extra support when making and attending appointments. It can increase the recording of next of kin or carer details and can be used for administrative tasks such as routinely sending out appointment letters in easy-read format for annual health checks and targeted screening.
Usually, patients on the intellectual disabilities register will be known to a local learning disability service or social services.
Clinicians are also able to record some individually targeted reasonable adjustments, such as needing to wait in a quiet place, which could enhance a patient’s experience in another healthcare setting.
Making and attending an appointment
It is clear that for people with intellectual disabilities, a ‘one size fits all’ approach to making and attending appointments is inadequate. For many, automated telephone appointment systems or wordy appointment letters are barriers which prevent access to care. Simple adjustments can improve a patient’s experience of seeing their GP or practice nurse. Examples include
· appointment letters in easy read format
· reminder telephone calls the day before an appointment
· double appointments to allow adequate time for history taking from the patient and carer
· offering appointments at times which best suit the patient e.g. at the beginning of a surgery when waiting times are more likely to be short or between surgeries when their carer can attend
· offering a quiet place to sit, away from the main waiting room
· a named member of reception staff who takes a particular interest in their patients with intellectual disabilities. The aim would be to facilitate their experience prior to and during their visit to the surgery. That person can also provide an easy point of contact for carers experiencing any difficulty in accessing services.
Considerations within the consultation
1) Accessible information
It is essential to consider how each person with intellectual disabilities communicates. This will allow a GP to tailor their approach to the individual; crucial in discussing problems, understanding concerns, working towards a diagnosis and providing information in a suitable form. It may be appropriate to offer written information in easy read format, but awareness of alternatives, such as Makaton symbols, is important. Modalities other than written material may be more helpful for those with more complicated communication needs.
We should attempt to use clear and simple language without jargon to explain things. Summarising the consultation and checking the understanding of the patient and their carer help to clarify whether the information given is accessible.
GPs should provide patients with intellectual disabilities with a Health Action Plan. In March 2009, the Department of Health published ‘Health Action Planning and Health Facilitation for people with learning disabilities: good practice guidance’. In this guide, a health action plan is described as:
‘the actions needed to maintain and improve the health of an individual and any help needed to accomplish these. It is a mechanism to link the individual and the range of services and supports they need if they are to have better health... the plan is primarily for the person with learning disabilities and is usually co-produced with them.’
A plan, in easy-read format, is held by the individual and can be completed with the help of a carer. It can be used to help share health-related information with professionals (e.g. how someone displays pain) or as a record of health checks, medication or results. A Health Action Plans allows a person with intellectual disabilities to have some ownership of the information being shared about them and can encourage them to take some responsibility for their own health (e.g. targets such as healthy eating or increased exercise). Many local learning disabilities services provide Health Action Plans, but examples can be easily downloaded from the internet.
2) Involving cares/family members
Carers and family members provide a valuable source of information about a person with intellectual disabilities. Often they are experts in some or all aspects of the person’s medical and social history. They can help put any new problems into the context of the person’s usual functioning to prevent diagnostic overshadowing. It is helpful to document who attends with a patient with intellectual disabilities to build up a picture of their support network and to refer back to them again should the need arise.
Involving carers in decision-making and considering their opinions in a person’s best interests will strengthen partnerships and empower the carer. Providing information and support for carers, such as signposting to local groups or on-line resources, is imperative. We should make time to discuss carer entitlements (such as a Carer’s Assessment of needs) and help them to develop an ‘Emergency care plan’ which can kick in should they be suddenly unable to fulfil their role as carer (e.g. in case of illness).
3) Consent, capacity and advocacy
The Mental Capacity Act (2005) helps to support individuals who may lack the ability to make decisions for themselves. It is a legal framework which can be used by clinicians and others involved in care to assess whether an individual has the capacity to make a specific decision at a specific time. This may include consent to investigation or treatment. A person must be assumed to have capacity to make a decision unless proven otherwise. ‘All practicable steps’ must be taken to give them information in a way they understand and support them to make such decisions.
The assessment takes into account a person’s general understanding of the decision which needs to be made and the consequences of making or not making the decision. In addition to understanding, the assessment also requires a patient to retain the information discussed, to weigh up the pros and cons, and to communicate their wishes. We must make every effort to support an individual’s decision-making process.
A Mental Capacity Act toolkit for GPs can be found on the RCGP website at http://www.rcgp.org.uk/pdf/CIRC_Mental%20Capacity%20Act%20Toolkit%202011.pdf
It also has a checklist for undertaking a Best Interests decision, when a person is found to lack capacity under the Act. Below is an example of a Best Interests checklist, taken from ‘Supporting People with Learning Disabilities: Good Practice Guidelines’ - Calderdale and Huddersfield NHS Foundation Trust June 2010)
* Consider all the relevant circumstances; what might the person’s wishes havebeen had they the capacity to make this decision?
* Could the person gain capacity in the future with further information, teachingor support or due to a fluctuating condition?
* Encourage the person to participate as fully as possible
* Consider the views of other relevant people (where practicable and appropriate)
* Consider whether the outcome could be achieved in a less restrictive way
* What are the persons known values & beliefs?
You must not make any ‘best interest’ decisions on the basis of the individual’s age, appearance, behaviour or condition.
Remember to consider reasonable adjustments when carrying out these assessments, such as offering information in an accessible form and giving an individual additional time in which to make a decision.
Ensure any medication prescribed is appropriate for the individual. Healthcare providers should always ask the patient or carer whether they have difficulty swallowing medication, and assess the reasons for this. Doctors should ensure that known swallowing difficulties are taken into consideration when prescribing medication . Considerations should include ease of administration e.g. once a day preparations, and route of administration.
Supporting your patient in Secondary Care
For people with intellectual disabilities needing assessment in, or admission to, hospital, the GP can provide an important role. This can start as soon as a referral letter is generated, by clearly stating a person’s medical problems and additional needs.
Careful planning of an admission with carers or support workers and liaising with the Learning Disabilities hospital team can reduce anxiety. The process may also facilitate reasonable adjustments prior to admission, such as visits to familiarise a patient with the hospital, altering the ward environment to suit the individual and making peri-operative arrangements e.g. admitting a patient on the day of the procedure or minimising time spent ‘nil by mouth’.
Health action plans or hospital passports help to ensure essential information about a person is passed on to hospital staff. Some hospitals now use VIP (vulnerable in-patient) cards which identifies an individual as having additional needs.
Hospital passports can be critical to ensuring patient safety (for example, to avoid allergies, choking, falls or longer term harm such as contractures). Information is also used to plan for personal care such as eating and drinking, and personal hygiene. Provision of basic care, whilst maintaining privacy and dignity, is essential. This can avoid unfair expectations on family carers and social care staff.
The GP should also be involved in discharge planning. This is particularly important for patients who have complex needs or support arrangements. Clear discharge information e.g. new diagnoses, medication changes and follow up arrangements should be given to patients and their carers in a suitable format.
Within General Practice, there are many small changes which we can make to improve the service we provide for our patients with intellectual disabilities. Reasonable adjustments allow patients to be treated equitably and the involvement of carers can greatly enhance this process. Locally agreed coding can improve identification of patients with intellectual disabilities and allow us to audit our services.
Many barriers to accessing healthcare can be overcome with a little flexibility in our appointment systems, effective communication and the provision of accessible information. Most of these reasonable adjustments do not cost anything.
Every effort should be made to involve an individual in decisions made about their care and if this is not possible, we should choose the least restrictive way forward, acting in the patient’s best interests.
We should consider how we can facilitate a smooth passage into and out of secondary care, involving carers and liaising with both hospital and community teams.
Lastly, we should ensure our practice complaints procedures and patient reference groups are inclusive; allowing all our patients to have their say in how we are performing and involving them in service development.
More information on reasonable adjustments can be found on the Improving Health and Lives: Learning Disabilities Observatory website http://www.improvinghealthandlives.org.uk/projects/reasonableadjustments/
This article was first published on this site in 2013.