8 weeks and counting: Health Care Support

7 Jan

The National Health Service (NHS), officially launched in July 1948, was based on three core principles:

That it meet the needs of everyone
That it be free at the point of delivery
That it be based on clinical need, not ability to pay

Living with a chronic medical condition makes me grateful for the NHS. Although the NHS does not cover all the costs of the technology that allows me to better manage the condition and lead a more normal life with type 1, I have the cost of my insulin covered. Without insulin, I will die. Hirsch (2016) ¹ states that

“the insulin patent from the University of Toronto was sold for $1 with the understanding that cheap insulin would become available.”

However, not all countries adhere to pricing principles that recognise that the original sale of the patent was priced to ensure equitable access to insulin, regardless of ability to pay. Hirsch documents how the pricing of insulin in America has exploded.

“A $7.3 billion business in 2005 achieved a $21 billion global market by 2013, mostly as a result of the US healthcare system’s ‘willingness to pay for modest differentiation and its acceptance of repeated price increases’. The United States was (and is) paying a disproportionate amount for insulin, and although there are many complex reasons for this, the most important one is simply because there are no real price controls, as one would see in the government run systems of Canada, the United Kingdom, Germany, or virtually any other country. In fact, although North America accounts for 7% of the world’s diabetes, it accounts for 52% of global insulin sales.” ¹

This situation leads to frequent heart-breaking stories from the US covering patients’ inability to afford insulin and their rationing of use, leading to ketoacidosis and death.

The NHS struggles with funding and does not feel able to allow health care professionals (HCPs) to provide all of their type 1 patients with advanced technology, due to the cost, despite recognising the benefits such technology brings. Nevertheless, I recognise that, with only a few exceptions, the contact and support that I have had over the many years of diagnosis shows that diabetologists are very supportive of their patients, are keen to do what is best for them and would like greater ability to offer access to the advances in technology that aid management of the condition.

My access to care

From diagnosis in 1972 until 1998, a year after my final pregnancy, I attended outpatient hospital appointments on a regular basis. Following initial care provided by Royal Manchester Children’s Hospital, I spent 3 years in my teens under the care of Yale New Haven Hospital in Connecticut, USA. Although health insurance cover provided by my father’s employer covered some costs for those 3 years, it did not cover all medical costs. I participated in early insulin pump research under Dr Bill Tamborlane at Yale New Haven Hospital in 1980 and the final health care payment made by my father in the summer of 1981, totalling $995, secured my own Auto-Syringe AS*6C pump, allowing me to continue using this method of treatment after we returned home to the UK.

On leaving the US, I was referred to Guy’s Hospital in London aged sixteen, where I valued access to the specialist care they provided and their ability and willingness to help with managing my treatment, while I continued to use the American pump for a further 10 years. I could travel to London easily from our new base in the South East while I was in the sixth form of school, and later, once I had left school, arranged appointments to coincide with university holidays. I worked in central London after graduating, and Guy’s Hospital was in close proximity to my employers, so it remained convenient for me to arrange twice yearly hospital check-ups there.

Logistics became harder to manage once I was married and had a young family. Appointments for check-ups were made six months in advance and there was no ability to change appointments without delaying them for several months. Trying to find help with childcare was difficult. The alternative - negotiating public transport and a clinic visit with a toddler, was also difficult. Appointments could require a lot of waiting around, interspersed with short slots of time seeing first one and then another person responsible for different aspects of care. I struggled. I returned home from one hospital appointment feeling most of my focus had been on watching and amusing my son and that the only benefit I obtained from the appointment was knowledge of my routine test results.

I tried a move to the type 1 outpatient clinic at our local hospital. Childcare was often still difficult to source. Appointments continued to involve long periods of waiting: they seemed to be based on a standard set of checks and questions rather than a more personalised assessment of me and whether I had any specific needs regarding how I was managing the particular demands of type 1 at my stage in life. After living with type 1 for 26 years, I was feeling that I learned little at these appointments other than knowledge of my full set of blood test results. I have always found access to this data important to assess my own ‘performance’ against targets. I don’t want to feel judged by healthcare professionals, but this does not stop my continuing to reflect upon my own ‘performance’.

In consultation with my GP, I next tried moving away from hospital outpatient care and having check-ups with my GP every six months. The same healthcare checks were performed by him as I had had in hospital and I continued to be seen for annual retinopathy eye screening. Results continued to fall within target ranges and, in recognition of my confidence with self-management, appointments were reduced to annual check-ups.

I continued quite happily with this model of care for a period of 10 years post pregnancy until I started to experience greater difficulty managing blood glucose levels as I entered the perimenopause. My GP had always been very approachable and had made a point of saying to me, at each appointment, that if I was having problems or needed additional support outside these annual check-ups, to contact him as necessary. So, in 2008 I sought additional help.

I was experiencing roller-coaster blood glucose levels that multiple daily injections (MDI) were incapable of managing effectively, despite a predictable daily routine, and I was keen to obtain access to an insulin pump. I did not expect this to provide a simple solution to the issues I was facing but my experience of the benefits in managing the hormonal changes in adolescence using the American insulin pump made me confident that it was a tool that would allow a more immediate response to rising or falling blood glucose levels at problem times of the day.

I booked an appointment to see my GP, equipped with several pages of A4, recording the issues I was experiencing, what I had already tried to do to address these problems using MDI, and asking to be given access to an insulin pump. My GP explained that primary care providers are not able to make decisions approving access to pump therapy but he said that he would refer me to the local hospital so that I could make my request there.

The next two years were the worst two years in my nearly fifty years of diagnosis as I tried to obtain the health care support that I needed. As I wrote in blog 9, dealing with the emotional impact of managing life with type 1, so much of my life with a chronic medical condition has not only required but also resulted in my becoming an expert in how the condition affects me. By the time I ask for help from HCPs, I will have already experimented on myself, trying everything within my repertoire and any new ideas that I feel may work, in an attempt to resolve whatever difficulties I am experiencing. I was dispirited by the lack of respect that I felt was shown by the hospital staff for my assessment of the issues and problem-solving attempts and my understanding of the condition; they would not or could not agree any sort of plan which would lead to pump access if all else failed.

Primary v Secondary care

It is interesting to look back on my care over almost 50 years and consider the issues of choosing between primary (GP centred) and secondary (hospital centred) care. During a particular stage in my type 1 life, my choice to accept GP only care, seemed to be the best option for me. I had already been diagnosed a long time and there seemed to be no additional knowledge or advances in treatment that hospital appointments could offer – I felt I had reached a plateau. The stepping back from hospital centred care could free up both my time and some NHS resources, possibly enabling better support for others at an earlier or different stage in their type 1 diagnosis.

However, I do think there were downsides to having care provided solely by my GP. I forfeited any ongoing relationship with a hospital care team and I believe that my not having such a relationship with a team whose members knew me and understood me as a patient and how I managed my type 1, made it more difficult for me to get acceptance of my assessment of the difficulties that I was facing, once I was referred back into the system.

A report by Diabetes UK (April 2021) recognises that

“For the delivery of optimal outcomes, there is a pressing need to effectively facilitate the flow of people with diabetes through the different areas of the NHS and wider social support services, depending on their needs at the point of healthcare access.

The formation and emergence of Primary Care Networks (PCNs) affords an opportunity to strengthen integration between primary, community and specialist care, and to provide diabetes services that address the needs of the person with diabetes…” ²

I am a strong supporter of shared care for my type 1 between primary and secondary care. When I was feeling complete despair regarding a lack of information and lack of progress from the hospital, in supporting me with the management problems I was facing, it was my GP who stepped in and I believe was instrumental in brokering a solution. I just wish that the system of referrals and the understanding that he already had of me as a patient, could have carried more weight with the specialist care team, when I was seeking help at the initial point of referral.

In addition to a more integrated approach between primary and secondary care, I feel that there are other areas that, if addressed, would provide significant improvements to my patient experience.

Continuity of care

I very rarely see the same person twice when I attend hospital appointments. I don’t know whether I feel this more strongly than others, as a result of having had difficult encounters with a few medical practitioners in the past. I need to feel I trust the person I see and if I see a new diabetologist at each appointment, I cannot build up that trust. I appreciate that when I am seen only annually, health care professionals who have seen me previously may not remember me. But what is important here is my confidence in their interaction with me.

At one time, I participated in research with a diabetologist whose approach I particularly liked and trusted, and I asked if I could maintain continuity of care with him, in outpatient clinic appointments. After initial success, I received a very flattering vote of confidence as he stated that although he was happy to pop into consultations, it benefitted the more junior doctors to see patients like me, to learn from the approach that I took. I understand and appreciate the pressure on healthcare resources but I missed the trust I felt in his approach and the value gained from appointments led by him.

The support I find most valuable is in talking to clinicians involved in or aware of new research and discussing whether alternative ideas for tackling management issues may be worth trying (regardless of how well I may appear to be managing, using existing techniques); I like to feel that the clinicians I see are also able to offer ‘cheer leading’ support, recognising the effort expended to manage such a complex and relentless condition.

The Importance of Emotional Support

The NHS England website summarises the House of Care framework

“created out of a need to change the way we deal with long term conditions.” ³

They identify barriers to providing great care for people with long term conditions, including

“emotional and psychological support: in particular, a lack of attention to the mental health and wellbeing of people with ‘physical’ health problems.” ³

There have been many occasions over the last 50 years when I have felt that health care for type 1 has reached a plateau. At those times, I felt that there had been no advances to the physical treatments and so life was about maintaining the management of the condition as well as I could, using processes that I was already very familiar with. Recognising the mental strain that management of a long term chronic medical condition can cause is always important, but I have found it to be even more essential during the periods when I felt that I was ‘treading water’ with no medical advances on the horizon. I do not think that these are periods suffering from diabetes distress as such but simply facing up to a recognition that there will be frequent difficult days that will continue into the future with no end in sight. This is why I find it so helpful when HCPs are willing to recognise this, offer support and give credit for the effort that managing the condition requires.

This is an area where I have benefitted enormously from primary care support. Perhaps my GP, having a special interest in diabetes without being a diabetologist, is more likely to look at me as a whole person rather than focusing more on the physical health problem. At my last review, his leading question was not directly about any of my test results but wanting to know how I was coping with the relentlessness of the condition and the emotional effort required to maintain my HbA1c levels in the range that I did. I have had similar conversations with the practice nurse at previous appointments, recognising the effort that is required to manage the condition.

The value of conversations like this should not be underestimated. Although they may be unlikely to lead to any practical solution to the challenges, knowing that a health care professional recognises the effort, regardless of how ‘successful’ I have been in meeting targets, leaves a lasting impression and ongoing positivity to help me get through the difficult days.

Collaborative partnership for care

Coulter, Roberts and Dixon (2013) identified the importance of commitment by healthcare professionals to partnership working.

“Health care professionals who do things with people rather than to them can achieve so much more, but this is not sufficiently emphasised in most training programmes.

Clinicians need to learn to practise a consulting style that is curious, supportive and non-judgemental.” ⁴

I recognise that the role of a diabetologist must be difficult. Patients have different needs and expectations from HCPs depending upon their length of diagnosis, personality and confidence in making self-management decisions. Some patients will be looking for definitive answers. After all my years of experience with the condition, I do not believe there is any one right approach to many of the management issues encountered – just several ways of dealing with issues, each with its own pros and cons. I therefore appreciate honesty and, when HCPs don’t have a firm answer, I would prefer them to say so. I find it beneficial to have an open discussion without judgement about the advantages and risks of approaches that I might try, leaving me to make a decision that I feel is appropriate for my lifestyle.

Getting left behind

I have huge frustration in sometimes feeling that I can be side-lined or left behind. How can I ensure that I am offered access to new medicines, consumables and technologies when they become available?

When, for significant periods of time throughout my diagnosis, there have been no improvements to treatments, I have stopped talking about the difficulties that I may have day-to-day with methods used, accepting that there is no alternative, because that is so often the case. I continue to work hard, accepting certain sacrifices in the choices I make to achieve the best results I can until the next series of advances become available to patients.

For HCPs looking in from the outside, I seem to be meeting desired HbA1c targets and so why change the status-quo in treatment? I am not consulted – it is easy to assume that the chances are that I will continue doing what I have always done making me a relatively low-risk to NHS budgets.

The issue can be as simple as needle lengths. I used to use 12mm insulin pen needles. I didn’t know shorter lengths were available. They had never been offered to me and compared to the length of needles available at diagnosis in 1972, I felt grateful for 12mm, thinner gauge needles. But, I eventually discovered 8mm and even 6mm needles were available and no-one had suggested I might like to try these. After so many years of experience, I find injections to be the easiest part of living with type 1. The hardest part is the mental effort, the constant decision making, coping with the unpredictability threatening to throw me off course from living a normal life. But do not underestimate the joy obtained from now using 6mm needles!

When there is the issue of access to funded technology. The National Institute for Health and Care Excellence (NICE) guidance currently recommends that technology is only offered to patients meeting certain criteria. However, I am hopeful that following Professor Partha Kar’s (National Specialty Advisor, Diabetes with NHS England) cross-sector leadership, considering guidelines for access to technology, this situation will start to improve.

“JDRF is delighted that the NICE has published draft guidelines recommending that all adults with type 1 diabetes should be offered a choice of flash or continuous glucose monitoring (CGM) in England. … The proposal will now undergo stakeholder consultation before the NICE guidance on type 1 diabetes is updated in March 2022. … Whilst the recommendations are a positive development, ensuring that Clinical Commissioning Groups (CCGs) and healthcare providers enact the guidance will form a vital part of JDRF’s ongoing advocacy work.” ⁵

I am keeping my fingers crossed for improved access to technology as I contemplate starting my 50th year of diagnosis in March 2022.

Notes

1. Hirsch, I B (2016); viewed January 2022

Insulin in America: A Right or a Priviledge?

Diabetes Spectrum, American Diabetes Association, August 2016, 29(3): 130-132

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5001219/

2. Diabetes UK website; viewed December 2021

How to Deliver Best Practice in Diabetes Care Across Primary Care Networks

At a glance guide, published April 2021

Best Practice in the Delivery of Diabetes Care in the Primary Care Network Structure

https://diabetes-resources-production.s3.eu-west-1.amazonaws.com/resources-s3/public/2021-04/PCN%20two%20page%20doc%20Final%20April.pdf

3. NHS England website; viewed December 2021