Dependency on the NHS can (unintentionally) be fostered at the start of the patient journey. How? you may ask.
- By providing little information about a patient’s diagnosis and prognosis to them at the point of diagnosis and only providing it verbally. And communicating that diagnosis via an unscheduled phone call or letter.
- By providing little information about possible treatment plans, and the pros and cons of them.
- Not signposting patients to relevant information, charities and organisations which can provide the information and support they may need going forwards.
- Writing letters summarising what was discussed at appointments and treatment plans in medical speak, a language the patient does not understand.
In my work with the Transverse Myelitis Society, I hear the above happening a lot. I have experienced it as a patient (got the name of my diagnosis in a letter; the name of the diagnosis opens a door to getting more info).
People are left to learn what it is they do not know during a stressful time. The not knowing and associated uncertainty can increase already high anxiety levels. It can feel like a battle trying to get info, and then determine if the info is relevant to you.
I’ve seen this foster a sense of abandonment among patients. They feel so let down by their healthcare providers. It can also foster distrust. If a patient feels they cannot trust their consultant, GP, or other healthcare professional to tell them what they need to know, then is this patient going to follow their recommendations?
A patient can end up becoming reliant on the NHS professionals to do things for them. That reliance breeds expectation that that will happen. That expectation can then be passed on to others (parent to child, friend to friend, etc.).
When the expectation cannot be met due to lack of money, resources, competence, services not being joined up, whatever, then you have patients potentially upset with their treatment and care and potentially less likely to follow their medication regime, exercise recommendations, etc. Their health issues may worsen as a result. They return to the NHS for treatment. The cycle continues.
Lack of information is an issue for neurology patients
Lack of information has been identified as an issue in the Neurological Alliance’s Patient Experience Survey Falling Short: How has neurology patient experience changed since 2014?
- 41% believed that communication of their diagnosis should have been done more appropriately or was not at all appropriate.
- 45% were unsatisfied with information they have received about their condition
- 46% were dissatisfied with information they have received about their care and treatment options
- 53% were dissatisfied with signposting they had received from healthcare professionals to sources of voluntary sector support. A lack of information, particularly at the time of diagnosis, was a common theme in the survey.
I am sure many other health conditions are similarly affected. Not providing information to empower the patient is still happening at a time when the NHS can least afford it, and there are calls for patient-centred care and empowering the patient to be a true partner in their treatment and care.
Information is power
We say that information is power. And it sure is when you are diagnosed with a serious illness, chronic illness, or have a serious injury. When you get ill or have a bad accident, it often happens unexpectedly. It is not something you search for; you don’t want to get ill or badly hurt. So there is a very strong element of you don’t know what you don’t know.
If the people in the know don’t give you the information you need to know, it is that much more difficult for you to ask questions let alone the ‘right’ questions, advocate for your needs, be a part of decisions regarding your treatment and care, and find non-medical sources of support and information. You are not empowered.
Empowering the patient requires action by the NHS, charities and the patient
Please write letters summarising discussions had during appointments in plain English. A neurologist I once met said such a letter is meant to be the ‘care plan’ when he was asked why care planning was so poor in neurology (85% of respondents to the Neurological Alliance’s Patient Experience Survey said they have not received a care plan). A care plan is of no use to me as the patient if I cannot understand it.
If the doctor’s letters are meant to be the ‘care plan’, then they can’t be one dimensional, i.e. only about the medical side of things. People are not one dimensional and so our care cannot be either.
Make it easy for healthcare professionals to provide patients with information of national and local organisations which can support their needs. Develop a national database of such organisations available to all NHS trusts. Set it up so healthcare professionals can add information about local organisations.
Until such a database is developed, make it routine in your ward/practice and during appointments to ask what other non-medical support patients require and signpost them to appropriate NHS and non-NHS services and organisations.
Explain to the patient how your local NHS trust/hospital/GP surgery works in relation to their needs. When you enter an NHS system as a patient, you don’t know the in’s and out’s of how it works. Here’s a recent personal example. A doctor initiated on the same day two appointments (in different clinics) for me even though one of them has to follow the other. The reason? The second appointment is in a clinic that has longer wait times than the first appointment. By the time the date for the second appointment comes through, it should occur not long after I have had the first appointment. This was a consultant using his knowledge of how the system works for my benefit. (His care was compassionate and patient-centred! Yay @UCLH!)
In my experience with a serious illness hospital in 2008, the neurologist looking after my care knew their stuff. They were good. And nice. But they didn’t tell me much about the illness and what to expect in recovery. I had to figure out the majority on my own. So this is a gentle reminder to give your patients information verbally and in writing.
Produce information that your members or beneficiaries would find useful. Ask them what information they need. In fact, they may want to help you produce it. Have relevant healthcare professionals review it for accuracy. Schedule a date for when you will review the information in the future to ensure it is still up to date and accurate. The Information Standard guidelines can help you produce good quality information.
Develop relationships with healthcare professionals and hospitals as they are the conduit to getting your information to the person who needs it. This takes time. However, it can go a long way towards helping someone newly diagnosed get the support they need sooner rather than later. And as a charity, this is often a key reason why you exist.
Google is a great gateway to information about your condition from expert sources and your peers. Keep in mind that what may seem like an ‘expert source’ may not actually be one. If you are not sure, make a note of the information you came across and its source and ask a suitably qualified professional at your next appointment or the charity who supports people with your condition.
Your peers can be a great resource for information. However, please do not make changes to your medical routine without speaking to your doctor first. Your peers may be experts in their condition as it relates to them, but they are not experts in how the condition affects you. And sometimes, the information they provide can be incorrect so they also cannot be the only source of information.
If you can, take your partner, another family member or friend to your appointments. They can be your second pair of ears and take notes for you. Thus freeing you up to ask questions and listen. Also, your family member or friend may remind you to ask the doctor about certain things you haven’t yet asked.
Prepare for your appointments. Keep a note of questions you and your family has about how your condition impacts you. Keep a diary of how you are affected. This helps the healthcare professional to help you. That is key. In the world of managing our health, the doctor-patient relationship is a two-way street. As much as we need them to give us information, we need to give them information too. Rather than have dependency on the NHS, it’s about sharing the dependency on the NHS, charities and patients.
What’s it like for you?
What has your experience been like learning about your health issue and how to manage it? What support did you get from healthcare professionals and charities?
If you are living with a chronic illness or the after effects of a serious illness, or are caring for someone who is and would like support to enhance your sense of emotional wellness, have a look at how we can work together and get in touch for a free no obligation consultation.
Pass it forward
Although this blog is written in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to share it with the world, share it using the icons below.
If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened and whether you have to, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more.
© Copyright Barbara Babcock 2017