The Healthcare and Prescription Charge Reform of 2020 and a Type 1 Diabetes Support Group - Lila Bernstein-Newman (33464304) - LILA BN
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Lila Bernstein-Newman (33464304)
The Healthcare and Prescription Charge Reform of 2020 and a Type 1
Diabetes Support Group
Logged into Facebook 19 October 20:01 2020
TYPE 1 NETWORK [closed group]
Sally Knoles
18 October at 17:52 London
Has anyone tried “RealCare” Pen Needles??? They’re £2 cheaper for a box of 100 than
the ones I have now but my DSN1 told me a patient of hers used them and twice the
ACTUAL NEEDLE bent going into the bung on the insulin pen??
View 2 more comments
Pete Sales Hi Sally! I bought a box of RealCare a few months ago and
had no problem! It has saved me £5 a month but that’s not as much as I
would like!!
Amy Peters-Jones That’s great @Pete! Unfortunately for me @Sally,
my experience of RealCare is that they often bend or get blocked so it’s
really a lottery if you’re actually going to receive the right dose.
James Faith
17 October at 13:43 York
“Certain chronic conditions will fall under the umbrella of those whereby medication
and equipment will no longer be funded by the National Health Service. Out of pocket
payments will be made directly from the manufacturers. Those who cannot afford
necessary medication and equipment may be eligible for cost exemptions providing
evidence of their financial situation.”
6 months on and I still can’t believe the Healthcare and Prescription Charge Reform has
actually happened, no more free insulin? Free healthcare is a right! Where’s the
350million for the NHS?
5 angry reacts 2 sad reacts 1 like
1
DSN stands for Diabetes Specialist Nurse. Within the National Health Service(NHS) in the United
Kingdom, a DSN is the main port of call for individuals with Type 1 Diabetes and is “a trained nurse with
special expertise in the care and treatment of diabetes.”(Westcott, online article, 2012)
Logged into Facebook 21 October 14:24 2020
TYPE 1 NETWORK [closed group]
Meg Goodman shared a link.
20 October at 17:55
Check out my latest blog post! Some thoughts on the new National Health Service
charges.
A Burden on the NHS?
I haven’t posted in a while but this is a topic that..
WWW.MEGSDIABETES.CO.UK
Loading www.megsdiabetes.co.uk 21 October 14:26 2020
A Burden on the NHS?
I haven’t posted in a while but this is a topic that’s had a lot of requests. For years, my
access to life-saving medication and equipment was without problem due to the
fortune I’ve had in living in the UK for the entirety of my life. Not only has the
necessary prescriptions been available but they’ve been free. Unlike our US friends on
precarious healthcare insurance, especially back in 2017 when the American Healthcare
Act was passed. Remember when the endocrinologist, David M. Tridgell (online article,
2017), spoke of how his patient, “Joe”, lost his insurance and could not afford the high
price of insulin and so developed life-threatening Diabetic Ketoacidosis. Of course,
many countries still do not have basic access to insulin or have faced even more
painfully high costs for it. According to T1International2, in 2015, the average person
with type 1 diabetes in Brazil was using 87.2% of their monthly wages to buy diabetes
medication and equipment (T1International, website, 2015).
With the backdrop of these statistics, life for us in the UK was a breeze. I was aware of
those across the globe less fortunate than I, but I felt safe in my easy access to all my
healthcare needs. A few years back the discourse on healthcare changed in the UK. The
Guardian (Campbell, online article) warned us in 2017 that, “The NHS could ‘pop’ unless
it receives an emergency cash injection…” In the previous year the same newspaper
used the headline, “Diabetes drugs cost NHS nearly £1bn a year.”(Campbell, online
2
T1 International helps to “support local communities by giving them the tools they need to stand up for
their rights so that access to insulin and diabetes supplies becomes a reality for all.”(T1International,
website, 2018)
article, 2016). So, with the rising cases of, mainly, type 2 diabetes, the conditions
became a strain on the institution we loved and were so grateful for. In this new
context of a struggling NHS, not only was I fearful for a more complicated life, but I felt
guilty. I was a burden. I was sucking money out of the system. People were scared, they
needed the NHS, their family needed the NHS. Regarding the Brexit bus assuring
millions to the NHS, the New Statesman (Umunna, online article, 2017) claimed that
“without that big red bus promising £350m more a week for health services, the British
voters would not have given them their narrow victory.”
I continued to believe in the Kantian ideal that people should not be treated as a
means to an end (Misselbrook, 2013, p.211). Forcing me to pay for the medication that
keeps me alive may relieve some of the tension in the NHS but that didn’t mean it was
not my human right to have free access to the tools to save my life. Doesn’t the
Hippocratic Oath imply that doctors should act in the best interests of their patients?
(Sokol, online article, 2008)
Rod Sheaf (1996, p.11) has written about how the idea of ‘need’ doesn’t align with a
market concept. He claims, “the more a person needs healthcare, the less able he
usually is to enter markets to get the means to buy it.” A system like this will inherently
bring disparity.
I can no longer have insulin for free so I must pay to stay alive. I have the money to
afford my life, there are plenty who don’t.
Meg x
Loading www.megsdiabetes.co.uk/about 21 October 14:50 2020
About Me:
Hi! My name is Meg Goodman and I’ve had Type 1 Diabetes for 32 years.
I’m a novelist, blogger and Labour supporter from Sussex who’s interested in
the use of social media for those with chronic conditions and disability
rights.
If you have any questions or want to get in touch, don’t hesitate to email me:
meggoodman@megsdiabetes.co.uk
Logged into Facebook 22 October 08:53 2020
TYPE 1 NETWORK [closed group]
Meg Goodman shared a link.
20 October at 17:55
Check out my latest blog post! Some thoughts on the new National Health Service
charges.
A Burden on the NHS?
I haven’t posted in a while but this is a topic that..
WWW.MEGSDIABETES.CO.UK
View 1 more comment
Jay Bates Healthcare is a commodity, not a right. The more
economically driven the healthcare system, the faster the development
of cures and improvements in products (Illing, online article, 2017).
“Services with high ‘added value’…usually yield the highest profits.”(Sheaff,
1996, p.180)!! Therefore, if you want a cure to be a reality, and morally to make
the right decision for future generations, - this is the only way forward!
Sarah Goldstein @Jay Bates Are you really looking towards the US for
inspiration? In the World Health Organisation’s constitution (1946), they
envisage “the highest attainable standard of health as a fundamental
right of every human being.” Here’s the website:
http://www.who.int/mediacentre/factsheets/fs323/en/
That’s the sort of world I want to belong in, our health is a right. If money is
what it really comes down to, then don’t they realise that those who can’t afford
insulin will have costly hospital admissions from complications that the
government will have to swallow if the patient cannot pay! It goes right back to
when pay beds were introduced, though they were just one per cent of the
overall beds, they started and represented this chink in the perfect chain of what
the NHS meant, “the treatment of patients should be determined exclusively by
criteria of need, as distinct from the ability to pay.”(Klein, 2013, p.85). They
created dual standards in our healthcare and it’s gone down from then.
Jay Bates If you read further on in that link you’ll see they say, “health
as a human right creates a legal obligation on states to ensure access
to timely, acceptable, and affordable health care of appropriate
quality…” Notice AFFORDABLE. Healthcare can be a commodity and enjoy the
benefits of a free market whilst still being accessible for everyone. Is it unethical
to make you pay for your food? As David Green (1990, p. ix) says, health is about
personal preference so how can a government know the optimal amount to
spend? We will always want more than can be afforded by tax! Therefore, it is
fairer to let the individual decide their own needs.
Mae Stone As a global network, Facebook’s helped us to understand the
severe lack of access to insulin or the ridiculous costs facing those in
developing countries. Insulin is plentiful in the UK and I don’t believe
anyone could be struggling very hard to pay. If anything, we’re getting a dose of
reality, this is how people live across the world.
Logged into Facebook 23 October 16:31 2020
TYPE 1 NETWORK [closed group]
RECENT GROUP PHOTOS
(Someecards, online image, Please Santa, help a diabetic out)
(Fisher, online image, 2017)
a diabetic out)
Facebook group - TYPE 1 NETWORK [closed group] demographics
age
13-20 21-30 31-40 41-50 51-60 61-70 71-80 80+
Yearly wages
student/retired £40
Logged into Facebook 25 October 09:43 2020
TYPE 1 NETWORK [closed group]
Lila Bernstein-Newman Write something…
Facebook is a different tool for those with chronic conditions. Toni Bernhard (online
article, 2012) concludes that as well as living in a different world, “those with chronic
pain and illness live in an invisible Facebook world as well!” A platform where reality
and frankness is found and where action and awareness spreads. The latest 2020
government reforms, leaving people without free access to healthcare and insulin has
this group split. Similarly to what Katrina L. Hinson (2017, p.23) says, support groups
allow conversations around the past, present circumstances and the future. Things can
be said here outside of a doctor’s office, things that can influence the quality of care, if
heard. With social media, those with type 1 diabetes are aware of the struggles of poor
Americans with no health insurance or refugees with no way to obtain insulin whilst
enjoying free healthcare in the UK. However, even before the reform they unfairly felt
the guilt associated with the costs of their condition. One Diabetes.co.uk forum member
(Travelling enthusiast, forum post), regarding reusing needles, said in 2014, “part of this
is also ethical. I know we get free health care here in the UK, but it’s not an unlimited
source of funds. So if my saving a few quid on needles pays for [someone] else to get
treatment for something else, I think that’s my decision to make.” Therefore, you could
argue a market system could alleviate people from what they believe is morally right
when it comes to taking advantage of equipment and medication for their own health.
They are more able to be the sole controller.
The online Type 1 presence is not new to advocacy and action with the likes of T1
International, celebrity involvement in campaigns such as the Juvenile Diabetes
Research Foundations’ (JDRF) “T1D Looks Like Me” and Facebook frames for profile
pictures.
James Norton’s (JDRF, online image, 2016) T1D Looks Like Me photograph.
I propose a way to explore whether this can be taken to a level that creates something
new. An action that doesn’t fall on either side but questions both by turning the reform
into a starting point for another system.
My proposal is this:
To use the existing communities to create a new form of access, enabling a fair
distribution of equipment and a way to spread access to less fortunate areas. Have you
seen John Ryan’s (2014, website) project, ‘Declarations of Interdependence’? It “is a
series of interactive prototypes that reposition individual and collective roles.” It
includes websites that need more than one user logged in and computers that require
two or three people to operate them. The new reform may make the patient more of
the central decision maker in their own healthcare but we could push beyond western
individualism and consumerism, similarly to the aforementioned design, by making
healthcare choices social and also not allowing one, separate source, to make the
choices.
Multi-user Keyboard (Ryan, online image, 2013)
Quorum Browsing (Ryan, online image, 2013)For a long time now open-source information of how to hack continuous glucose
monitors(CGM)3 has been available through the #wearenotwaiting movement with
Nightscout (website, 2018) an “open source, DIY project that allows real time access to
a CGM data via personal website, smartwatch viewers, or apps and widgets available for
smartphones.” This speeds up the process of creating new technologies and works
better as a collective. There is also a lot of information on how to hack CGMs so the
sensors last longer than the FDA approved time, saving money.
Nightscout CGM data on watches (Nightscout, online image, 2018)
So, make a new online system for your own healthcare needs, let’s say it’s called The
Diacare Collective. Shift the weight from autonomy at the price of the now
overwhelming choice of medical products available at varying costs that you may not
be able to afford. A collective group, a pool of resources (including open-source
information), a group bank balance created by affordable subscriptions. Ten elected
admin will only be able to access and alter the new healthcare platform with a
combined log in. Once logged in, they can access the budget and use the money in
collectively-agreed ways. With a joint compilation of money, discount prices for
wholesale products will be exploited to make prescriptions cheaper for all. Alongside
the savings for each individual, I foresee an overall savings balance that can be utilised
as donation money to help fund charities focused on insulin access for all and a cure as
well as funding prescriptions for those with very little money within the collective.
3
A continuous glucose monitor is “a way to measure glucose levels in real-time throughout the day and
night. A tiny electrode called a glucose sensor is inserted under the skin to measure glucose levels in
tissue fluid. It is connected to a transmitter that sends the information via wireless radio frequency to a
monitoring and display device.”(Medtronic, website, 2018)Diacare logo (Bernstein-Newman, 2018). The blue circle is a widely-used symbol for raising the awareness of Type 1 Diabetes (Wood, website, 2014). The elected admin will all need to log in at the same time before any changes can be made to the Diacare Collective platform. This will help ensure everyone acts in the best interests of the collective. Platform-wide log ins will be used for voting on healthcare needs. Subscriptions are based on how much you can afford so there are elements of this being a tax system bubble inside a healthcare market driven society.
(IDF, logo, 2018)
(Ascensia Diabetes Care, online image, 2018) (T1International, logo, 2018)
(JDRF, logo, 2018)Examples of Facebook profile picture frames, used to spread awareness.
(Bernstein-Newman, 2018)Logged into Facebook 30 May 14:39 2021
DIACARE COLLECTIVE PAGE [liked by you]
Diacare Collective
29 May at 10:17 London
Thanks to the savings generated from those using Diacare 10,000 individuals who
could not afford insulin in the UK have been donated their essential supplies. 100
children have survived Type 1 who wouldn’t have otherwise. And worldwide, 500,000
people now have access to affordable insulin that “does not impact [their] ability to pay
for other essentials like food, shelter or education.”(T1International, website, The Type
1 Diabetes Access Charter, 2018)
We think, in an Act-Consequentialist view4, we can be united in the great good Diacare
has brought to many instead of pondering the ethicalities of whether our healthcare
should have been free in the first place.
Thank-you!
59 likes 3 heart reacts
Logged into Facebook 31 May 09:43 2021
TYPE 1 NETWORK [closed group]
Tom Green
30 May at 19:08 Leeds
OK so Diacare was good for a bit. But now all the companies have removed wholesale
discounts and there’s loads of new software on pumps and CGMs to stop them being
hacked. So basically…I’m paying what I paid when the reform was introduced with a bit
extra for charity? I think I’m going to leave. I would rather spend my money on my
OWN choices. The open-source data was there all along so I can still use that. Diacare
just put it in one place.
View 3 more comments
Jodie Leebridge Stick with it! I’ve found being part of the group has
made me much more confident with my diabetes and, if I was buying my
own stuff, I don’t think I would actively donate to charities on top.
4
“Act Consequentialism holds that the permissibility of an action is based on how good its consequences are
compared with those of its feasible alternatives.” (Vallentyne, 2007, p. 22)Plus, I hear news that they’ve saved up enough to start paying members
involved in the open source hacking data and software engineers so we could
begin to fund more patient-led innovation technologies!
Cheng Wong I joined Diacare to save money. I did that. But it didn’t do
what I really wanted, which was to repeal the reform. I think if you don’t
think healthcare should be free anyway then you might like it but I’m
not sure because it encourages more grass roots innovation than market
competition to drive innovation. The government aren’t going to repeal the
reform now because the NHS has saved millions in just these few months.
Bob Davids I appreciate the way Diacare made our healthcare more
social and patient-led. However, sometimes I think about how it ignored
the other chronic conditions affected by the reform. Sure, some within
these communities may have thought free healthcare was not what they wanted
anyway, but Diacare has actually strengthened the governments positions and I
don’t know if it’s morally right to have gone straight to the needs of those with
diabetes without thinking how other chronically ill individuals may be affected.
Not only did it leave out other conditions but it has divided some with Type 1
because now we function on a split healthcare system.
Theresa @Bob I feel, from a deontology point of view, that we owe
more to those we have a special relationship with (McNaughton and
Rawling, 2017, p.32). So to me, Diacare was acting in the best ethical
way to help the Type 1 community while realising that within our community
some people feel differently about paying for their prescriptions.
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