In the UK, one of the most common complaints we see from our members is about access to doctors and nurses in primary care. Not just for diagnosis but for their ongoing treatment with injections as well. The experience seems to be the same in the USA and in other countries where we have members.
In October 2024 the NHS updated their website page on the delivery plan for recovering access to primary care. This plan was initially published in May 2023 and perhaps many of our readers will not be aware of the goals and progress in this area. NHS England » Delivery plan for recovering access to primary care
The January newspapers were full of headlines about plans to reduce waiting list times and reforms which allegedly are going to free up appointment times.
In my role as CEO of the Pernicious Anaemia Society I am regularly notified of these changes. As a registered charity and patient advocacy group we are naturally interested in any changes and improvements to primary care in the UK; we want to make sure that our members get some benefit from these changes.
The autoimmune condition Pernicious Anaemia (PA) is deemed to be the responsibility of GP practices, and our diagnosis and treatment is handled primarily through doctors and nurses in that setting, so changes in primary care are of particular interest. However, referrals to specialists and waiting list times have a particular relevance in view of the number of symptoms and co-existing illnesses PA sufferers may have.
The Delivery Plan document from the NHS is so long and frustrating that I lost the will to live no more than a third of my way through it. However, it contains some important discussion points from the perspective of the Pernicious Anaemia patient that I thought I would use my opportunity to write a blog post pointing out some of the challenges for the NHS, doctors and patients alike.
Feel free to read the whole thing if you like but in case you find it too wordy here is an AI summary of the key points:
Empowering Patients
- NHS App: The plan aims to increase usage of the NHS App by practices and patients. This will allow patients to view their medical records, order repeat prescriptions, manage appointments, and receive messages from their practice. By March 2024, they aim to have over 90% of practices offering this functionality.
- Self-directed care: The plan encourages patients to manage certain conditions themselves, such as monitoring blood pressure at home, or by using self-referral pathways for specific community services.
- Expanding community pharmacy services: The plan aims to expand the role of community pharmacies through the “Pharmacy First” service for minor illnesses and expanding existing services for blood pressure checks and oral contraception.
Implementing Modern General Practice Access
- Tackling the 8am rush: They aim to make it easier for patients to contact their practice by phone and online, and to know the same day how their request will be handled. This includes better online tools, improved phone systems, and faster response times.
- Modernising workflows: Practices are encouraged to adopt a new approach called “Modern General Practice Access” which involves faster navigation, assessment, and response to patient requests. This may involve using different team members to handle enquiries and leveraging technology for better communication.
Overall Goals
- Improve patient experience by reducing wait times and frustrations with contacting practices.
- Reduce pressure on GPs by empowering patients to manage their own health and by utilizing other healthcare professionals.
- Increase efficiency within practices by improving workflows and utilising technology.
Challenges
- Some practices may find it difficult to implement the changes due to lack of time, resources, or bandwidth.
- There may be a need for cultural change within practices to adopt new models of care.
Support for Practices
The plan includes funding and support offers to help practices implement the changes, such as training and digital tools.
Artificial Intelligence summary complete – let’s look at each of those topics:
Empowering Patients
One of the basic tenets of the patient/doctor relationship as espoused by the NHS is that of joint patient doctor decision making. So, any investment in rolling out tools that help patients manage their own health and have access to their own records is a step in the right direction. Right?
I spoke to my own GP practice about this. Their interest in tools to help patients has stopped with the NHS App which allows me to order repeat prescriptions at the click of a button, although I am unhelpfully told by a “pop up” message, that when I do press “repeat”, there is no guarantee my (hydroxocobalamin) prescription will be repeated if the doctor (alone) decides not to sign it off!
I can’t see my blood test results in the NHS App or book an appointment. I can go online via the GP website and make an appointment for an eConsult but only a limited number are available each day, otherwise I must telephone and wait in a queue. My former more provincial GP practice did have a call back facility but moving across the county border to a new practice leaves me in a queue with no such option. Surely a routine nurse appointment for a B12 injection could be done via an online calendar.
My local hospital where I go for a regular blood test has such a system; it works perfectly, no queuing on a phone or turning up to pathology and waiting. I can pick a time that works for me and my work life as they offer Saturdays, lunchtimes and some evenings. My hairdresser and other service providers all have similar online booking and all of these, including the blood test, put the date and time straight into my diary on my phone at the press of a button. Wouldn’t that help cut down on missed GP practice appointments too? Many patients especially those for routine appointments would surely be happy to do this thereby cutting down time in the queue for those who prefer to telephone.
I have been granted access to my records through “systmonline” but these records don’t include my blood tests or treatment from anywhere other than the GP surgery unless the GP surgery decides to download them (which my surgery doesnt) or unless secondary care writes to the GP directly with a paper letter that comes in the post with a stamp and delivered by the Post Office (who only deliver on some days) to the GP and to me. If I attend an appointment at the GP surgery there are no visible notes of any symptoms I have reported, just a factual “IM injection in left arm administered on such and such a date”. Even though my GP says the reason I cannot self-administer is because the surgery is monitoring my long-term chronic condition! This is laughable, they and their predecessors have never once asked me how I am or followed up or offered any test related to my PA.
Which leads me on to Self Directed Care:
Patients are to be encouraged to manage certain conditions themselves, such as monitoring blood pressure at home, or by using self-referral pathways for specific community services. But what about self-administration of a non-toxic, water-soluble vitamin essential to keep me alive? A diabetic patient can be sent home with insulin (an overdose of which could be fatal) and a post-surgery patient with a blood thinner, both a lot more dangerous than hydroxocobalamin, but so many of our members are told that they cannot self-administer their own B12 injection. St Guys & St Thomas’s send home patients abusing nitrous oxide with hydroxocobalamin supplies and instructions on how to self administer but I, a patient with a long term chronic illness, am not to be trusted to self inject.
One of our members recently brought up the point about self injection with their MP, who referred the matter to the MHRA. The Authority response was the typical “our hands are tied because it is an IM injection of a prescribed drug”. But this is not the case in other countries where the same product is licensed for subcutaneous injection. Let’s also mention here the ridiculous irony in the UK whereby an aesthetic or wellness vitamin B12 injection can be administered by a beautician so long as they don’t say it is for medical reasons. Apparently in this setting, hydroxocobalamin is not a “drug” but a “wellness product”. It’s the same product from the same source. For some this route of wellness injections has been a life saver so I’m not going to advocate for this route to be shut down!
The government, despite recommendations to the contrary, does not invest in research to ensure that subcutaneous injections is explored as a viable option to the intramuscular route. The cost of this research would easily be recouped by saving the NHS time and money in injection appointments. Most recently the NICE guidelines again recommended that research into IM and SC methods was to be carried out. So far deafening silence from the government and research institutes….
Then there is the discussion about Expanding community pharmacy services. My local pharmacy is exceptionally friendly, helpful and modern. I’d happily go there for my B12 injection rather than my GP surgery. But no, that is not currently allowed. In certain areas in Scotland, PA patients are reporting that they are being sent to vaccination centres to get their B12 injections because their GP is no longer providing that service. For one member that involves a 1.5 hour round trip. Really? Why can’t their local pharmacy administer it? Where is the logic and common sense?
Now let’s talk about Modern General Practice Access. Another goal was to deliver 50 million more appointments. According to the NHS, General Practice is delivering more than a million appointments every day and half a million more every week than pre-pandemic. With an aging population, the number of people in England aged 70 or over is up around a third on 2010, from 6.1 million to 8.1 million, and this group has on average five times more GP appointments than young people. This document from NHS England put the total number as of 2020, for the UK, at 9.15 million people. We know that B12 deficiency and Pernicious Anaemia is more common in this age group.
There is undoubtedly a need for more appointments based on this information, but more is not necessarily better if those appointments become formulaic and time constrained.
The most common complaints patients have about GP appointments are:
- Difficulty getting an appointment: Long wait times, difficulty getting through on the phone, and being offered appointments far in the future.
- Short appointment times: Feeling rushed during consultations and not having enough time to discuss all concerns.
- Access to specific GPs: Difficulty seeing a preferred or the same GP, especially for ongoing conditions.
- Telephone or video consultations: Some patients prefer face-to-face appointments and find remote consultations less satisfactory.
- Out-of-hours access: Limited availability of GP services outside of regular opening hours.
A friend (not one with Pernicious Anaemia) recently mentioned to me a situation whereby her GP told her she could only mention one symptom and would need a separate or double appointment if she had more than one symptom. She made a separate appointment, saw the same doctor who said he could have dealt with it at the previous appointment! I appreciate that no GP wants to hear a long list of everything from headaches to bunions, if I had to have an appointment for all the symptoms I had prior to my PA diagnosis, I would have needed to book a whole day with the GP! Surely a correct diagnosis is easier with all the symptoms i.e. the whole picture.
Primary care, like many parts of the NHS and health systems globally, is under tremendous pressure. In a recent report one in five people said they did not get through or get a reply when they last attempted to contact their practice.
The Fuller Stocktake Report stated, “there are real signs of growing discontent with primary care – both from the public who use it and the professionals who work within it”. I would underline that. My role as CEO of a health condition related charity means my path crosses with health care professionals regularly and at least 3 in the last month have expressed their discontent and their plans to leave, and a further one on maternity leave was put off returning to work as a GP despite many years of training. I see also the other side, the patient that feels unheard, uncared for, caught up in bureaucracy and treated like an annoyance.
Last June at a conference, I was struck by a comment from one of the speakers who talked about the importance of getting away from the current “National Sickness Service” back to the true ideal of a National Health Service – treating patients holistically, focusing on prevention and not just cure, and long-term joint responsibility with the patient for wellness and well-being.
Cutting bureaucracy to give practice teams more time to focus on their patients’ clinical needs sounds like a great ideal. One bureaucracy is the unclear and conflicting number of guidelines and practices that are followed for conditions such as PA. We have the NICE Guideline, we have the BNF, we have individual pathways in Integrated Care Boards and then we have the GP practices own “policies”. If you have a B12 deficiency you will be lucky to get the best treatment recommended as it seems to me that GPs pick and choose based on outdated understanding of research and good practice.
A member reported recently that her GP practice will only give 12 weekly injections despite her neurological symptoms of pins and needles and cognitive confusion and forgetting words. At her previous surgery she was receiving an injection every 4 weeks and was symptom free. Despite pointing out the BNF and NICE guideline recommendation that more frequent injections are necessary if symptoms persist and that patients with neurological symptoms should be on a maintenance dose of every 8 weeks, this doctors practice told her that it is their surgery’s policy to only give 12 weekly and under no circumstances would she get any more frequent injections despite a formal diagnosis of PA. The doctor’s comment was “if I give you 8 weeks it will open the flood gates and everyone will want more”. Further the practice manager informed this poor patient that if she asked again for more frequent injections, she would need to find another doctor’s practice. Her question as to how they plan to deal with her returning symptoms remains unanswered.
Another PA patient reported that her GP told her that if she supplemented her 12 weekly injections with privately administered injections from a beauty salon, he would stop her prescription. A vegan or someone who needs a B12 top up can go along to these beauty institutions and have as many B12 injections as they like, often with no questions asked, but a person with PA and therefore a known malabsorption problem is threatened if she wants to feel better? Make it make sense!
Now, I’m not always about bashing the NHS, in fact I’m one of the biggest supporters and always try to work constructively with doctors whether in primary or secondary care. I’ve had some excellent service myself, not just for my PA and iron deficiency issues but for other matters over the decades of my life. Many health care professionals I interacted with clearly want to do their best for the patient and are often frustrated with the system. Sadly I have also encountered some brain numbingly crass bureaucratic systems and comments from demotivated, rude and downright unhelpful staff.
I have also encountered some belligerent and awkward patients who are not prepared to listen, change their ways or be open to embracing new ways of working.
As CEO of a patient advocacy group and chair of the B-12 Alliance, I find it difficult to remain silent when I witness daily the real-world consequences of a broken system. Luckily I have this blogpost forum to make some noise. Your comments and sharing of this article can help amplify it. Despite lofty ideals touted in newspaper headlines, the system is fundamentally flawed and destined to fail without a profound shift in perspective from government, healthcare professionals, and even patients themselves.