HOW TO BE A SAVVY PATIENT
Learning how to self-advocate for our own health stacks the odds in favour of the best outcome, as Tessa Hilton discovers
Tips to help you get the best care possible
Women are often brilliant at advocating for the healthcare of our men, children and older relatives. Speaking up about our own health, though, communicating thoughts and feelings and making sure we have the choices to meet our own health needs? No, all too often we’re not nearly so good at doing that.
Yet medics believe that, despite all the advances in modern medicine, the ability to self-advocate is a uniquely powerful and positive force. ‘Patients who are actively involved in managing their own care achieve better outcomes,’ says
Professor Sir Sam Everington, an innovating GP and chair of Tower Hamlets Clinical Commissioning Group (CCG). He cites research showing patients can control high blood pressure better if they self-monitor using a home blood pressure monitor rather than relying solely on checks at their surgeries, and advises healthcare professionals to think about what matters to patients rather than what is the matter with them.
If you’re still sceptical and think managing your own healthcare is likely to be the last thing you need when you’re feeling ill or anxious, read on – a few very simple steps can make it easier to get the right help.
Be prepared
You wouldn’t see a solicitor or an architect without some thought beforehand, yet not everyone treats medical appointments the same way. Before you go, ask yourself what you want out of the consultation and note down your symptoms and the dates you experience them. Sometimes a pattern emerges, for example, things get worse after eating certain foods or late at night. Write down any medications you are taking and think about family history if it may be relevant.
‘Doctors talk about people who are good historians, and working out dates and chronology is something we can all prepare in advance,’ says Lucy Watson, chair of the Patients Association (patients-association.org.uk). ‘If you have a lot of things you want to say, it might be better to make two appointments and decide which are the most urgent of your problems for the first meeting.’
Some GP practices now have an online pre-appointment questionnaire. ‘At first, patients found it irritating having to complete this because it felt like work they had to do, but it is proving to be hugely beneficial for all sides,’ says Professor Everington. ‘It gives me time to think, look at their notes and be thoroughly prepared for the consultation.’
The final piece of the jigsaw, Professor Everington believes, is to encourage patients to access their own notes. ‘Young, techy people are, in fact, the least likely to do this,’ he says. ‘The greatest success is with patients with chronic illnesses and the elderly because they are the ones with the greatest needs.’
The days of the difficult receptionist have largely gone but, as the gatekeepers to a GP’S time, they do need to ask what an appointment is about. Do you require urgent help or are you prepared to wait to see a particular practitioner? Of course, it’s easier to mention pain than piles, or migraine than a mental health issue, but the more you can tell the receptionist, the better chance you have of seeing the right person, who could be a physiotherapist, nurse practitioner, social prescriber or, indeed, a doctor.
Remote consultations are very likely here to stay, but if you need a face-to-face session, say so, advises Lucy Watson: ‘If treatment is no longer working, for example, then decisions about palliative care involve very sensitive discussions, which are better in person.’
According to research, it’s normal for us to forget 40% of what we’re told by a doctor almost as soon as we leave the surgery, so consider taking a friend or relative to an appointment with you.
Open up
It’s very normal for patients to worry that minor symptoms might signify something major. If you have any concerns whatsoever that what you’re experiencing could be a sign of something serious, it’s very important to say so, says GP Dr Alison Wint, clinical lead for Cancer Commissioning NHS Bristol, North Somerset and South Gloucestershire and Trustee of Target Ovarian Cancer (targetovariancancer.org.uk).
‘There was a big drop-off in people coming forward with their concerns during the first lockdown in 2020, so we know there are people out there with cancer who haven’t been diagnosed,’ she says. ‘Ovarian cancer has a variety of symptoms. Persistent bloating, difficulty eating, tummy pain, needing to wee more and changes in bowel habits, weight and energy, especially in postmenopausal women, all need investigating.’
Meanwhile, GP Tom Templeton, author of 34 Patients (Michael Joseph), believes that fear often stands in the way of people seeking the advice they need. ‘If you feel frightened, it’s very
normal to keep it to yourself,’ he says. ‘But it’s vital to come forward as soon as you’re worried – don’t ration your own healthcare. If your doctor then says that everything is okay, don’t ever feel you’ve wasted their time. The job of a doctor is to evaluate and reassure. And, if any symptoms persist, always go back.’
Check out Dr Google
It’s natural that most of us go online these days, but make sure to only look at reputable evidence-based sources (see the box below). Health charities are an excellent first port of call, advises Fiona Browne, a Trustee of the Patients Association and Director of Education, Standards and Development at the General Osteopathic Council. Her passion for collaboration between clinician and patient stems in part from her own experience with lupus, a life-long autoimmune disease that attacks tissue and organs.
‘I do read quite widely about new research, but I’m conscious that a lot of people managing chronic and other conditions often don’t have the energy to go into that sort of detail and they don’t need to,’ she says. ‘Patients bring to the collaboration their expertise in their own bodies, how that feels and whether they are able to live their lives; clinicians, on the other hand, bring their expert knowledge, and practical, technical and research expertise. It’s their duty to keep up to date with the latest research and to give patients information. The important thing is mutual communication and trust.’
If you feel, however, that the rapport isn’t there, how can you set things on a better course? Most of us naturally worry about upsetting the very people we want onside.
‘It’s important to have kindness and compassion on both sides, but both may be empty pots,’ says Fiona. ‘The patient may have been feeling ill for a long time and may feel that no one seems to care or be listening, while on the other side the clinician may be hugely busy, under-resourced and may not have had time to grab lunch or even go to the loo!’
Taking someone with you to a consultation with a clinician can often change the dynamic, suggests Fiona. If you’re not being offered an option you want, then try to understand clearly why not. Ask if there is a lack of evidence, if they think you don’t have this particular illness or if the option is not available on the NHS within guidelines of the National Institute for Health and Care Excellence (NICE). Reflect on that information and consider discussing it with your GP.
If you feel that your relationship with your GP isn’t positive and want to change practice or ask for a second opinion from a specialist, the Patients Association has advice on how to do it.
Choose a specialist
Whatever the nature of your problem, when it comes to seeing a specialist, you can choose to be referred to a hospital outside your area and also which consultant-led team you would like to see. Just as GPS list their areas of interest, so, too, do hospital specialists, so do some research online.
When you then have your hospital appointment, you should leave with a likely diagnosis, the plan for follow-up appointments, details of medication, the name of your consultant and who to contact if you have problems or further questions. The department or consultant’s PA can be a helpful ally if you want to contact a member of the medical team.
When it comes to accessing mental health services, your GP is the referral route, but Lucy Watson believes there is further to go in this regard. ‘There’s been a lot of talk about parity in physical and mental health provision in the NHS Long Term Plan,’ she explains, ‘but it’s still the case that, if you have a heart attack today, you’ll get fantastic health provision and be up and about in a few days, while if you have a mental health crisis, you may not get something done about it today.’
And for all the expertise and tests on offer, delayed or missed diagnoses do happen. Fiona says that while her own lupus diagnosis was quite speedy, as she had quickly become very ill and was hospitalised, many people’s journey to diagnosis with the condition takes seven years. ‘Even so, I recall at one point being told my blood tests were fine and the doctor expected me to be pleased,’ she says. ‘I had to say, “But I’m not all right!” Just because we don’t know what’s wrong with a patient, it doesn’t mean there is nothing wrong.’
Ultimately, as the pandemic has proved so dramatically, medicine doesn’t always have an immediate answer to everything, but helping ourselves to access the best healthcare takes thought, work, communication and effort on both sides.
Use evidence-based sources for research