There is ‘significant variation’ in the use of health and care passports for people with learning disabilities and autism across ICSs, according to new guidance from NHS England.
Health and care passports are documents that provide information about a patient to support the delivery of personalised care. They should be regularly updated in response to changes in their health and wellbeing and their interaction with health and care services (see box for more detail).
Anyone can have a passport, but NHS England recommends that patients with a learning disability or autism are two groups ‘in particular’ who could benefit from one.
However, new guidance has suggested there is variation in their use across ICSs and called on systems to ‘review existing arrangements’ to improve health outcomes for those with a learning disability or autism.
It said: ‘Some ICS’s have invested significant resources – working in close collaboration with people with lived experience to produce a health and care passport and embed its use across the ICS. There are some ICS’s who may be at the start of their journey to develop or refresh such documentation.’
It added that sometimes patients show the passports to staff and it is ignored.
Aaron Senior, the lived experience autism advisor for the NHS England learning disability and autism programme, said: ‘One of the lead doctors picked up my hospital passport and said ‘why do I need to read this’ and then he quickly put it back where he had found it.’
The guidance recommended that passports be portable so it can be used in various settings, with all providers within an ICS to accept each other’s passports ‘as a minimum’.
‘Having the “wrong” version of a health and care passport such as a version that is not familiar to the health and care service the person is attending should never be a reason to disregard the information in the passport,’ it said.
It added that the passport could be physical, digital or in a combination of formats. It should be guided by the patient, as needs will be different for each patient.
It comes after NHS England appointed its first medical director for mental health and neurodiversity, Dr Adrian James. The role will support the transformation of services for people with mental health needs, autism, learning disabilities and those who are neurodiverse.
A health and care passport
It is good practice to have a document as:
- A resource for clinical and administrative health and care staff that contains information about the patient to support them to deliver personalised care.
- A health and care passport that is owned by the individual. Each person decides what they want to include, who they want to support them to complete it and who it should be shared with.
- A resource to support a patient with a learning disability and autistic patients to think about what they want health and care staff to know about them to provide effective care and support and inform care planning.
- A tool to support and enable health and care staff to meet key legal duties including the Equality Act 2010, Reasonable Adjustments and the Mental Capacity Act 2005.
- A signpost to more detailed information including key care plans such as, eating and drinking, communication and advanced care plans.
What a health and care passport is not
- It is not a replacement for clinical records.
- It is not for the recording of clinical advice or decisions.
- It is not a substitute for recording information on the Reasonable Adjustment Digital flag.
- It does not replace the need to talk with the patient and their family or key individuals about their care and support.
- It is not a care plan nor should it contain care planning information.
Source: NHS England
