This months’ blog post from CEO Katrina Burchell discussed health inequalities from the perspective of the condition. The diagnosis and treatment of people with Pernicious Anaemia in the UK and on the wider international stage seems to follow a worrying pattern where many encounter obstacles at every stage of their journey with this autoimmune condition. In a personal exploration based on an article from a GP in National Voices, Katrina discusses why shared decision making and the informed patient should be something that general practitioners embrace for a win win situation.
Health Inequality is a buzz term now. Whilst it is most often used to talk about the unfair and avoidable differences in health outcomes and access to healthcare services between different groups of people within a population, it tends to focus on factors such as income, education, occupation, race, gender and geographic location.
There is, however, another area of inequality in healthcare. Which is for those with conditions, especially those that are long-term and chronic, where there is a lack of awareness, education and research available to the health care profession.
The following article was recently brought to my attention. It was so refreshing to read about a GP’s concern about the lack of spotlight on care for patients with long-term conditions. This single voice in what often feels like a tsunami of complaints from our members and forum posters about their GP-experience with the lifelong autoimmune condition of Pernicious Anaemia, was like a tiny flicker of hope which I really needed to help me focus on our plans for next year at the Pernicious Anaemia Society. Have we lost sight of long-term conditions? – National Voices
The authors of this article rightly recognise that failing to engage with the patient in the management of their health is disempowering. Treating people in disease silos and failing to support the social and psychological aspects of living with long-term conditions leaves the patient feeling distressed, uncared for, and concerned about their future treatment and their long-term health.
We hear so much from the NHS about joint patient-doctor decision-making in managing health. We know there are guidelines for the management of Pernicious Anaemia which can help improve the quality of life for many, and that doctors should have a good reason not to follow the guidelines rather than to just pick and choose which part of them they read and apply. Unfortunately, for many of our members, these NHS ‘word salad’ statements are in direct contradiction to the treatment they receive.
It can be hard to have a constructive conversation with your GP for many reasons. The fault can be on both the patient and GP side. Lack of time, breakdown in trust, lack of understanding is a two-way street. However, as a patient representative organisation we remind our members of two important tenets your doctor must follow:
Shared Decision-Making And Informed Consent. Read this useful summary before your next GP discussion: Shared decision-making and informed consent (from patients-association.org.uk)
A little while ago, on our forum there was a post about a GP’s ‘outrageous’ contribution to a conversation about stopping the patient’s treatment for a long-term health condition which requires lifelong B12 injections. I often feel heartbroken reading some of the posts on this forum. They regularly report poor quality consultations with healthcare professionals, but this one caught my attention by the volume of replies discussing similar experiences.
Since the publication of the NICE guidelines on B12 Deficiency, I have seen an increase in the number of comments and observations mainly concerning GP’s stopping or changing the frequency of their injections without any discussion. We hear quotes like:
“There are new guidelines which say oral tablets work as well as injections”. The guidelines do not say this, nor does any credible research.
“You don’t have PA anymore because your serum B12 level is high”. While it might be true that you may not have megaloblastic anaemia anymore if you are treated properly with replacement B12 therapy, the cause of your condition (which we still call Pernicious Anaemia (PA) in the UK) continues to exist and your symptoms will return if you are not treated. If people with type 1 diabetes are properly treated and their insulin levels corrected, they still have type 1 diabetes! I just don’t understand why GP’s tell patients they are ‘cured’ of PA if their serum levels are high but their symptoms continue.
Often, patients receive notices by text message from their GP surgery about their treatment being stopped. They are told that they will not be given an injection until they have a repeat blood test, even though they have a diagnosis of PA on file. Even though the NICE Guidelines, the BNF and the British Society of Haematology guideline all state very clearly that retesting while on injections is unnecessary.
In what world did it become acceptable to have this type of conversation, potentially one which is emotional and concerning, with a patient with a long-term condition, over a text message? It is like the bank texting you to say that they are closing your account and not giving you access to your money. It is like a cowardly relationship ‘break-up’ message! We know that GP’s are doing it to avoid having a difficult conversation, but this is not the way to treat people regardless of how challenging your job may be or how underpaid you believe you are.
The frustration I feel is not just over the money wasted in retesting blood in these circumstances, but for those poor people who slide into a very real fear that their symptoms will return, and they will be again debilitated by a B12 deficiency caused by an auto-immune disease or malabsorption which can be managed by a simple, water-soluble, inexpensive vitamin injection.
It seems that some healthcare professionals would rather have these patients clogging up their appointment schedule with further non-face-to-face discussions about one symptom at a time, prescribing potentially damaging, and certainly more costly, prescription drugs which are most likely unnecessary.
When you don’t feel well, you want someone to listen to you, not to necessarily agree with everything you say. You do not need a GP or a nurse to ‘rubbish’ your genuine symptoms or your informed questions. You do not need to have your concerns about access to treatment disregarded or to be told you are an addict when you explain how you feel better when properly treated with replacement B12. These are real examples I have heard myself. And as is seemingly more common today, there is never any need for your GP practice to threaten and blackmail you into submission.
I do not say this lightly about threats and blackmail. I have experienced this treatment directly from a nurse and GP at my practice. I have family members and friends who have had similar experiences. I consider myself lucky to not only be a well-informed patient about my condition but to be articulate and capable of questioning constructively. I expect a level of understanding about cognitive impairment, confusion and fatigue which comes with my long-term condition. I recently asked the nurse and doctor to repeat their reasoning for refusing something I had asked for, together with an explanation as to what their ‘rules’ were based on. I explained that as I had PA and was late getting my injection, I felt tired and needed them to repeat what they said. I was then shouted at. Yes, with raised voices and hands on hips! The GP stood up and aggressively waved papers in my face, the nurse joined in with the shouting and started typing angrily on her computer keyboard. A few days later I received a letter from the surgery saying I was getting a yellow card for being abusive and that I would be struck off their register if I asked questions again.
Seriously!
I will deal with this with the practice manager when I feel well enough. In any other job, that kind of behaviour by the doctor and nurse would have been cause for dismissal. As a patient with a long-term condition, I found it inexplicable. As CEO of the Pernicious Anaemia Society, they picked on the wrong person.
Back to the article which started this blog post and the question raised by the authors: “Is it possible we (GP’s) are focusing on the wrong things?”
The authors insightfully say that due to delivering care with little focus on planned conversations for people with long term conditions, this group of patients take up a disproportionate amount of NHS resource.
Most of this cost is down to the use of unplanned care, medication and treatments associated with managing complications. I’ve had injections for more than 20 years, and I’ve repeatedly asked for my GP surgery to train and allow me to do my own injections which I am perfectly capable of doing. This would save me and them time and give me a sense of control over my condition. They refuse, saying it is a prescription drug that I am not to be trusted with, and they need to monitor me. I have never once in 20 years had my response to their question “how do I feel” in between injection dates noted on their records. I have never been offered any follow up appointment after diagnosis, endoscopy, conversation with a GP or any indication that they know why they are giving me the injection. I’m really not sure what their ‘monitoring’ means! I have a family history of Pernicious Anaemia (a known risk factor), yet that fact is nowhere mentioned on my records.
I should come back to the very reason why the Pernicious Anaemia Society pushed so hard for the NICE Guidelines commissioners to look at the diagnosis and treatment of Pernicious Anaemia (which later became the NICE Guideline on B12 Deficiency in over 16s). The statistics the Pernicious Anaemia Society showed to the commissioning team, reflected a very clear waste of NHS time and money on unnecessary repeat testing, unnecessary and duplicated appointments and referrals, inappropriate delays in treatment, irresponsible trials of supplementation with oral tablets from supermarkets, insufficient frequency of treatment… The list goes on. It doesn’t even start to cover the cost to society and the economy of leaving these patients with PA being misdiagnosed or under-treated.
Whilst it feels as though there can never be enough resources within the healthcare system, I will admit that there are many who truly care and try their best within the confines of the restrictions. However, it does feel that by not treating people with Pernicious Anaemia and others with long-term conditions with the necessary respect, courtesy and involvement in decisions, GPs and practice nurses are missing an opportunity to help patients understand and manage their own health in the context of their life and subsequently and more importantly free up their own time and manage their budgets better.
The authors of the article conclude with some very helpful suggestions of how personalised care should be integrated into safe and effective clinical care. None of these are rocket science! They are simple suggestions that there is personalised support and quality reviews.
That means listening to the patient, not just ticking boxes off a list and typing codes into a computer.
It means providing patients with information and support to help them understand their incurable condition.
It means referring them to patient advocacy groups or support groups like the Pernicious Anaemia Society and working constructively with those organisations to provide materials that are suitable for those newly diagnosed and those whose circumstances have changed due to other conditions or changed symptoms.
It means training (re-training where necessary) health care professionals in having person centred conversations and listening to lived experience of the patient. Some examples of these real stories can be seen on our patient story page.
Perhaps, most importantly, it means conversations (not by text) that focus on enabling people to make decisions about managing their own health and ensuring that regardless of income, education, occupation, race, gender and geographic location and more importantly, the actual medical condition, they have access to quality treatment and empathetic care.
One of my favourite quotes about the NHS is that attributed to Aneurin Bevan:
“Illness is neither an indulgence for which people have to pay, nor an offence for which they should be penalised, but a misfortune the cost of which should be shared by the community.”
Now whilst it is obviously about the importance of a shared community cost of healthcare and you may have different political views, I ask you to read that again! Having Pernicious Anaemia is not an offence for which I should be penalised.
Illness is not something to be blamed or punished for, but rather a circumstance that requires compassion and support and which requires access to the necessary healthcare. As patients and advocates let’s ensure that the type of illness you have is not another reason for a health inequality.
Excellent article that resonates I am sure with most PA patients. Keep up the good work
It’s a terrifying and salutary thought that during the fifty two years that I’ve had P.A. a succession of doctors and nurses (in the same practice throughout) have probably had less knowledge about the illness than I do.
When covid “struck” (in March 2020) my then GP, very much to my amazement “allowed” the practice nurse to show my wife Gill how to do my monthly cyano B12 injections and gave us four sets of needles – four years later having bought our own supplies the situation is the same. I’ve had no contact from my surgery about how I am coping – perhaps they think I’ve died as I’m now 83 years of age.
I am dismayed at the negligence and lack of care displayed by the practice to which I have been a patient for over sixty years. Even my diabetes review is over the ‘phone so how on earth they can examine my feet, eyes and blood pressure.
Believe it or not doctors I’m still Clive-alive and a legacy member of PASOC.
This has been my battle for the past 25=years.
Pernicious Anaemia does not seem to be considered a ling-term condition
It is hard ti manage without support when you also have other long-term conditions,.
Osteo-arthritis, osteoporosis, hiatus hernia, asthma, ongoing neuropathy in the feet caused by late diagnosis of PA causing nerve damage and more.
Nobody checks on how I feel unless I have made an appointment for my B12 or attend a medication review.
I would venture to say that there wouldn’t be one person with Pernicious Anaemia who hasn’t a story of years of mistreatment by doctors /nurses etc. It doesn’t seem in the interest of ‘medicine’ these day to find the root cause of any illness. I am nearly 80 now and have suffered so many ‘illnesses’ (from childhood) that I couldn’t find paper enough to list them. So I’ve learned the ‘signs’ given by doctors when its simply not worth going back to them. When you say you need a full evaluation of your thyroid and they give you an order for a TSH only test, you should have educated yourself enough to realise they just don’t get it! Don’t bother to go back. I once asked a doctor to check my mouth which was full of strange ulcers,…he refused, telling me I was neurotic, and WHEN I got cancer, he would not be listening. 3 days laer my body broke out with shingles .
Yep,…walked out on him too. GP’s in Aust. have NO idea about Pernicious Anaemia, and how it can be the root cause of so many other complaints. …..except for a few Integrative Doctors whom you have to book months ahead and pay extra to see, but they DO listen, usually for an hour or so per visit and are far more eager to hear your story and do tests that other GP’s refuse to do. Also, they are more willing to let you B Inject yourself at home and as YOU feel you need it.
I have been doing this now for 3 years, and its easy, and though my bloods show my B is above ‘normal’, my doctor realises that I can’t live well without that weekly Injection. Also, you need a Compound chemist to get Methyl B Injections, and here at least, the Govt. is of no help – $30 aus per week, but for me, its more important than anything else.
I’m so sorry to read that you were shouted at. I’m not shocked as I’ve had similar experiences.
I think people could ask their GPs if they could record their appointments.