19th March 2015
The Patients Association response to the current NICE consultation on the topic of:
Diabetes
The Patients Association is an independent national health and social care charity
established over 50 years ago and has a long history of campaigning to ensure that
the voice of patients is heard within the Health and Social care system. We achieve
this through research, campaigns to support patients’ rights, lobbying Government to
address healthcare issues affecting patients and speaking up for patients and carers.
The Patients Association also provides an advisory national Helpline service to
thousands of patients each year who raise concerns about their experiences with
healthcare providers. The nature of these enquiries cover issues such as poor care
(particularly of elderly people in hospital), delayed or cancelled operations and
problems with the complaints services.
This offers us a wealth of information, with a database consisting of thousands of
cases, spanning many years and giving us a unique insight into the diverse nature of
concerns raised by patients themselves. In order to make the best use of this
information, the Patients Association provides data analysis and statistical research
to detect emerging trends and patterns, and any concerns can be targeted towards
improving patient care.
The Patients Association welcomes the opportunity to contribute to the NICE
consultation on the topic of diabetes. We hope that our insights and expert advice
are able to help shape the health and social care landscape for the benefit of
patients.
Patient-centred care
The Patients Association believes that care should always be centred on the needs
and requirements of patients. Patients must be at the heart of the health service, and
should be involved in all decisions about their care.
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The Patients Association hear frequently on our Helpline that patients want to be
treated as individuals, but often feel more like a statistic. Patients often tell us that
they feel that healthcare professionals only see the disease, but do not see the
person behind it. This is particularly the case with long-term conditions such as
diabetes. Healthcare professionals need to be able to engage and communicate with
patients as individuals; recognizing that diabetic patients are likely to be life-long
patients.
Patients with diabetes are likely to have regular contact with both primary and
secondary diabetic services over the course of their life, and so it is essential that
their needs and requirements are central to the shaping of policy in this area.
Each patient will have different needs with regard to continuity of care in healthcare
professional relationships. For many patients who are receiving life-long treatment
for diabetes, there will be a lot of anxiety and distress. The ongoing presence of a
familiar, trusted and reliable healthcare professional can give comfort to patients.
Meaningful information
Patient access to meaningful and clear information about diabetic services is
essential. If patients are to be able to make choices for themselves and manage their
own conditions, they need first to be able to understand the options that are
available. This goes beyond just giving patients information leaflets, and needs to be
at the heart of a consultation with a healthcare professional. Healthcare
professionals must guide patients through the information they have been given and
answer their questions.
Patients frequently tell us that they do not feel they understand their condition, their
medication or their side effects. We have even heard that some patients are afraid of
speaking to their doctor about these issues for fear of being rebuked by them.
Healthcare professionals need to have a full and honest discussion with their
patients to help them understand their medications and understand their concerns.
This needs to be captured in the consultation document and there should be clearer
guidance on this issue.
Many patients are today relying on information derived from websites. Healthcare
professionals should go through information with patients, explaining any points that
the patient does not understand and answering any questions they may have. In
addition, once information has been given to patients, patients should be given an
opportunity to absorb it in order to make a decision that is right for them. A “cooling
off” period of a day or two may be useful to ensure patients can use the information
at their disposal usefully. It should also be recognised that many patients may want
time to discuss the options they have been given with their relatives and loved ones
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to make sure that it is right for them. This is particularly the case when a patient may
require insulin and is likely to require life-long medication.
Particularly amongst elderly patients, there is still a perception that “the doctor knows
best” and some patients may be concerned about speaking up in front of them.
Healthcare professionals should take active steps to allay these concerns and make
it clear to patients that it is their care and they have the right to decide for
themselves.
We welcome this further emphasis of the need for more opportunities for patients to
be involved in decision making about their care, but would note that not all patients
will want to be involved in these decisions. It is also important where patients may
have limited capacity; they are still given appropriate opportunity to be able to make
some decisions about their care. We understand that separate guidance is being put
together on this issue but feel it is important to establish this principle in the main
body of the patient experience guidance.
Patient treatment concerns
1. Pen needles are used by patients every time they inject insulin, often many
times a day, and are a critical part of treatment. There a number of factors
that should be considered in the choice of needle for an individual. If all other
things are equal, it is not unreasonable to make a choice based on cost,
however this should not be the primary consideration. All needles are not the
same and needle type can have an influence on outcomes.
2. We believe that there is a case to recommend pen needles less than 8mm in
length in order to minimise pain and discomfort to patients and to improve
compliance.
3. We welcome the recommendation to advise patients to rotate injections sites
and see this as an important step in improving injection technique among
people on insulin therapy. Injection technique is actually a topic that covers
more than just site rotation. Other important parts of injection technique
include skin pinch up, angle of injection and duration of injection.
4. Injection practice in many people is poor and injection complications are
common. Good practice in injection insulin can have real benefits for patients
as well as helping health services save money. For example poor injection
site rotation can lead to lipohypertroghy that is associated with an increased
risk of hypoglycaemia, glycaemic variability, and excess insulin consumption.
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Access to services
The Patients Association has campaigned for many years for equal access to
healthcare services for all people, regardless of where they live. Diabetes is now a
universal and major health problem, and so all patients must have access to high
quality diabetic services. Diabetes management requires input from a multidisciplinary team covering a wide range of specialties. Very often we hear on our
Helpline that patients are waiting too long to see specialist diabetic nurses and
clinicians.
It should also be borne in mind that diabetic patients frequently have other coexisting health problems, and so frequently require regular contact with healthcare
professionals. It is therefore particularly important that they have access to such care
when they need it.
Patients frequently contact us to complain that their care is disjointed. They tell us
that there are failures of communication between different departments and varied
quality of treatment for those that require a multiple disciplinary approached to
tackling their medical needs. This causes stress for the patient and can have
detrimental health implications. For patients with long-term and complex health
problems such as diabetes, joined-up integrated healthcare is of paramount
importance. Co-ordination and communication between all healthcare professionals
is key in ensuring that patients receive the best possible care
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