Guest Post for IBS Awareness Month: Navigating the UK National Health Service for Irritable Bowel Syndrome (IBS)
IBS Impact is pleased to welcome a guest blogger this week for IBS Awareness Month. Julie Thompson, RD, known on social media as Jules_GastroRD, is a UK state registered dietitian specializing in IBS and other gastrointestinal conditions. She runs the Calm Gut Clinic in Lancashire, is an advisor to the IBS Network, the UK’s national charity for irritable bowel syndrome, coauthored with Alex Gazzola, IBS: Dietary Advice to Calm Your Gut (Sheldon Press: 2017), and blogs at Clinical Alimentary. We thank her for her time and expertise.
During IBS (Irritable bowel syndrome) Awareness Month, I would like to discuss access to care within the UK National Health Service (NHS). Understanding NHS systems is essential to know what services are available and the referral process. The NHS is seventy years old this year and is held in high regard around the world for its ethos of free care at the time of need. But care is not free; it is paid for by taxes throughout working life, and patients with IBS pay the same level as those patients with other medical conditions. But access is often reported to be poorer by patients with IBS and many patients report struggling to get referred on for further treatment if medications have proved ineffective. During a time of austerity and funding deficits access to NHS services is becoming more difficult.
Except for emergency care, all patients who need any treatment or investigation of symptoms will need a referral from the General Practitioner (GP). A GP is a doctor based in primary care who treats people with chronic or minor medical conditions and refers patients on, who need more specialist investigations, or access to specialist therapies available to help manage symptoms. They are the first port of call to those with digestive symptoms and for those who wish to have access to dietitians or mental health services for treatment of IBS. The GP’s role is often regarded as the ‘gatekeeper’ to services. Many people are diagnosed with IBS during early adult life, which means that it could be the first time that they experience the NHS, and they may not have a good understanding of ‘the system’ or what to expect.
In 2016 an organisation called the National Institute of Health and Clinical Excellence (NICE) produced standards to increase access to quality services for people diagnosed with IBS. The organisation also provides guidelines to those working within the NHS about what quality care looks like and bases these guidelines on evidence of what treatments have been shown to work. Guidelines are just that, a guide, and GPs can choose to use them or not depending on their knowledge of gastroenterology as a specialism and the patient’s individual needs. Standards of care are different; they are developed to drive up access and improve quality of care in the NHS, and as such, it is essential to know what areas of IBS diagnosis and treatment they cover.
Standard one is about the use of a test to exclude inflammatory bowel disease (IBD) during the investigation of IBS. It is called the faecal calprotectin test and is a test that identifies inflammation in the digestive tract. Along with testing for coeliac disease, this test for IBD is important to use. It is a relatively new test, and not all GP surgeries will have access to it at present. This situation is the reason the standard was developed – to increase its use. Other tests are used if this is not available, but none are as specific. Improvements in this standard will be driven by staff in the NHS such as Gastroenterologists and GPs with interest in gastroenterology.
Standard two is about giving a diagnosis. As IBS can be challenging to diagnose, this standard helps patients to have a definite diagnosis as soon as possible, without over-investigation. Over-investigation can prevent timely effective management and doesn’t improve symptoms. Without a diagnosis, people end up stuck in a cycle of having negative test results and worrying about what the problem is. A definite diagnosis can help to reduce unnecessary anxiety in people with symptoms of IBS and knowing the diagnosis can be very beneficial in acceptance and moving onto treatment.
Standard three is about diet, and as a dietitian, this is the area where I have more knowledge. Diet is a popular treatment for IBS and is arguably one of the most successful treatment areas. Working with the IBS Network I have heard many people report that they do not get referred to a dietitian by their GP, or they are handed a sheet about the low FODMAP diet printed off from the internet with a list of foods to avoid.
The reason for poor access is currently not known; we do not know if this is as a direct cause of dietetic departments not having services available or GPs not referring to limit numbers because of a perceived desire not to ‘overload’ dietetic departments with referrals. Not referring doesn’t help those departments and can ultimately lead to reduced availability. GPs giving dietary information to patients to quickly help symptoms is laudable – but handing over a list of foods to avoid is not good quality care or very practical for the individual. We do not know how successful a list of foods to avoid is for treatment and its provision can risk failure of therapy and malnutrition.
The low FODMAP diet is a three-stage diet, which needs to be followed to identify foods that should be avoided long-term and to include foods that do not give symptoms. This is important as many FODMAP- containing foods provide sustenance for the microbes that live in our gut and help to keep it healthy. We do have a first-line diet treatment for IBS included in the NICE IBS guidelines, and this is what should be used for patients. First line advice can be useful and comprises of other food and symptom triggers not included on the low FODMAP diet, and people with IBS should understand these triggers and how they affect them personally. A commonly unknown fact is that this advice can also reduce an overall FODMAP load to the bowel. The need to complete the full three-stage low FODMAP diet correctly with sound practical information is the reason NICE quality standard two states that patients requiring an exclusion diet are referred to a trained practitioner, the only qualified practitioners in the UK are registered dietitians.
Some dietetic departments are considering teaching groups of people with IBS meaning they can see more people more quickly. If you have contacted the dietetic department and it does not offer a service, often dietitians working in private practice can provide care. They are usually providing services at a reasonable cost and can offer online services if you live in an area where services are limited. Ensure your dietitian is registered with the Health and Care Professions Council as it is against the law for anyone to call themselves a dietitian if not registered, plus dietitians are the only practitioners who should be offering diet services for people who have a complex medical condition, such as IBS.
The standard four is about having access to an annual review if the patient wishes to have one. Many people live with symptoms of IBS for years, after the initial period of diagnosis and treatment, and may not discuss continuing symptoms with their practitioner. If the patient feels that nothing has helped, why consider saying that symptoms are still happening? Plus, the practitioner may feel that IBS is no longer a problem, as recurrent symptoms are not raised at an appointment. Patients not mentioning symptoms doesn’t mean they are not a problem and facilitating patients having access to new treatments, by having a review that can be requested to discuss symptoms is essential. An annual review is currently offered for many long-term health conditions, and IBS should be no different.
It can be challenging for a patient to be more determined in requesting a referral from their GP, as there is a mismatch in the balance of power between practitioner and patient. This situation can make symptoms worse if it results in anxiety or distress, which is very unfortunate and often not recognised. Being prepared for the appointment with a GP can increase both the patient’s confidence and the GPs awareness that the patient is knowledgeable about treatment and services available. Getting into conflict over referrals is not helpful for anyone, being assertive is a far better option. A patient can ask to see another doctor in the practice if they feel less confident in their current practitioner. What I would advise is the patient contacting the local hospital’s dietetic department for diet, to ask if services are available and notifying the GP that they have done this, at the start of the conversation. Let the GP know that you are aware that waiting times might be long, but you would like to at least be on the list. Try the first line diet advice with your GP while waiting – this can effectively treat symptoms for some people, and if it does, you can always cancel your appointment.
Having knowledge of the NICE guidelines and quality standards can help with getting access to a referral to healthcare practitioners and I would recommend all people diagnosed to at least read these standards or take a copy with them to their GP, if they wish to be referred, or want to have an annual review. Knowledge about IBS and what helps, the services available and treatments to try, is an essential first step in getting access to the treatment needed. The IBS Network self-care programme can provide more information.