From the moment someone sits down to be told that their HIV test result has come back positive, they set off on a journey. Because there is no cure for HIV, that journey is for life. At that first point of diagnosis, trying to see the road ahead can be like plotting a way through a bowl of spaghetti.
At this stage and later, a map or pathway of the journey is helpful. For both patient and healthcare staff the first three months can be complex. At this point, it’s important that patients and healthcare staff begin to share information and know what to expect.
This is not left to chance as each part of HIV care and treatment services must meet standards and guidelines set out by the NHS and by bodies like the British HIV Association. In Scotland, NHS Healthcare Improvement Scotland specifies in its HIV Standards that each NHS Board must have and use a document known as an Integrated Care Pathway (ICP) for people living with HIV. In other parts of the UK, clinics have developed pathways.
We need these pathways so that we know what will happen if we need to be referred to another part of the hospital, how the HIV clinic links with our GP, to record results of blood tests like CD4 and viral load, and to make sure that nothing is missed. Care pathways are not unique to HIV, but are used in other health conditions too.
To understand more of how Integrated Care Pathways work for HIV, it is helpful to outline what an Integrated Care Pathway is and how it works.
First of all, it serves more than simply a record of patient care. What makes it different to a set of case notes, is that it sets out how healthcare is organised, co-ordinated and governed. These aspects make it clear which member of staff within a healthcare team is responsible for specific parts of the journey through the healthcare system. It also connects the care provided with the research and evidence set out in the Standards and guidelines, which help patients and doctors decide on the best way forward.
Later, we will look briefly at the steps in a patient journey, but it is important to note that Standards apply wherever one lives. Local circumstances and patient preference mean that the exact means of achieving that Standards will differ, but in general they are the same based on the best evidence and experience.
Because the ICP is not a single-track line, but a map that takes account of when we might divert from the usual route, it is a way of recording variances. The real-life route is all-important in this regard. It is not an excuse to deviate from the Standard, but allows a degree of flexibility. That flexibility, however, has to be to the benefit of the patient because an ICP must be patient-centred. Recording the variances in the experience of patients allows a comparison between that’s planned and what’s real. Wherever that happens, there ought to be a note to explain the variance. Once a number of these notes can be analysed, this forms a basis for the continual development and improvement of clinical practice.
Use of an ICP doesn’t make the management of HIV any less complex, but it does simplify the process and ensures that each step is followed. The fact that core information is brought together into one document reduces the potential for important information to be missed when making decisions about next steps in care and treatment.
The fact that the ICP is linked to sets of standards and guidelines, allows for the document to be designed and used in such a way as to be used to audit and scrutinise clinical care, as well as to act as a tool in care and treatment management. In Scotland, where NHS Healthcare Improvement Scotland requires specific and improving standards, as well as equity of access to a set of services regardless of location, this serves as an important tool for scrutiny of NHS Board performance.
In essence, the ICP document describes for both the patient and the healthcare staff what is to be done, by whom and at what stage. Once this is in place, then it will act as a kind of Sat Nav system so that the bowl of spaghetti looks more navigable, and less confusing than it did at the time of diagnosis.
If one considers that in the first three months alone, there are potentially over 100 processes ranging from a confirmatory HIV test to recording a CD4 count, it is possible to grasp that good care needs to be well managed. With all the effort and stages, the ICP helps to prevent a patient duplicating the same tests unnecessarily, and also avoids delays. It is a way of staying on track with keeping the next appointment, understanding when and when not to go to the GP, who we might speak to if we need extra help, and to check whether or not medications are about to run out. When it is shared and explained, the ICP helps us to make better sense of the HIV journey.
Definition of an Integrated Care Pathway:
“An Integrated Care Pathway is a tool, which is locally agreed, multidisciplinary, based on guidelines and evidence where available, for a specific patient/client group, forming all or part of the clinical record, documenting the care given, facilitating the evaluation of outcomes for continuous quality improvement.”
Sue Overill, Journal of Integrated Care (1998), 2, 93-98
Integrated care pathway
A crucial aspect of an Integrated Care Pathway is that it reflects the patient needs and journey. It has to be ‘patient-centred’, a term which is often bandied about to the extent of being meaningless, but in this context is vital as the ICP has to be as close to real life as possible. It is to improve patient well-being in every aspect, and not simply to fit what’s convenient for the clinic.
For it to work properly, two factors follow logically and practically. First is that for the plan to work, patients need to be consulted and to participate in forming the plan. This might be by a discussion with a number of patients, or through a patient questionnaire or a combination of both. Although not every patient can take part, if there s something about your care that you don’t understand, or something that would help you in particular, it is always helpful to discuss it with your doctor or other healthcare worker. In Scotland in the next few months when ICPs reach a next stage of development, you might find that you are asked to participate in a clinic questionnaire to help with the planning of care that meets the national Standards.
Secondly, it depends also on good co-operation between patients and healthcare staff. For example, staff are expected to record a CD4 and viral load count within a certain number of weeks, or have a discussion about how to look after your own health or protect sexual partners. Keeping appointments on the patient’s part might seem too obvious, but this simple contribution is important to getting the best care based on the Standards.
HIV Integrated Care Pathway
During the first three months, an ICP would set out a number of fundamental aspects of future care, including:
History, e.g. diagnosis, sexual and drug history, psychiatric history, and history of allergies.
Examination, e.g. neurology, body fat distribution, checking inside the eye.
Investigations, e.g. confirmatory HIV test, resistance test, partner notification, key staff and consent to contact GP
Screening, e.g. cervical screening for women, CVD risk, and cognitive screen where necessary.
Ongoing care, advice on reducing sexual and drug risks, partner notification, needs of any children, psychological support and consent to contact GP.
Over time, other aspects of care, including referral to other healthcare professionals form part of the ICP.
In summary, use of ICPs improves HIV care through:
- Better co-ordination of your care
- Agencies and disciplines working well together
- Quality of care as the priority
- Knowing about each worker’s roles and responsibility
- Direct audit of clinical practice
- Professionals know who to communicate with about your care
- Full participation in your health care in partnership with all healthcare workers
NHS Healthcare Improvement Scotland will host a further HIV Services ICP Learning Event in September 2013 when more work will be done to coordinate ICP development that supports clinics and services across Scotland.
If you want to read more on Integrated Care Pathways, here are some links:
Integrated Care Pathways: A Guide to Good Practice - Nicola Davis …
The Sexual Health and Blood Borne Virus Framework 2011-2015
NHS Healthcare Improvement Scotland
Map of Medicine
This blog first appeared as an article in Baseline Magazine, July 2013.