Status report from deep in the matrix…

You may have noticed I’ve been a bit quiet lately. There’s 2 reasons for this:

1) Trying to figure out how much I need to use my ventilator during the day. Sometimes I get it right and am dancing round the house getting everything done and even baking 3 types of cookies. Sometimes I get it wrong and have to get the absolute essentials done and then spend hours lying in bed with a hot chocolate and an audiobook read by Benedict Cumberbatch. I know, it’s such a chore. Usually it’s somewhere in the middle, but working on it.

2) Adult Social Care research. When the essentials are done but I’m not flomping into bed yet, I go digging.

A couple of years ago, I did some FOIs, put the results in a large database, and published it online. Dozens of NHS Clinical Commissioning Groups (CCGs) were then told by the Equality and Human Rights Commission (EHRC) that their policies may be unlawful under the Human Rights Act. Their “Choice policies” or similar were placing made-up cost caps on Continuing Healthcare (CHC), with the result that people could have been placed into institutional settings (care homes, nursing homes, …) against their choice and without an assessment of what the impact of taking someone unwillingly away from their home would be. Not Cool, and Not Lawful: we all have the Right to Private and Family Life, and interference with this right has to handled very, very carefully. You can’t just chuck a number on a page and go “That’ll do, savings targets achieved”; you’ve got to treat people like people.

The CCGs decided to change their policies to be consistent with the Human Rights Act, and we all lived happily ever after…

Until Barnet Council started to do something that seemed a bit too similar:

I hope someone living in Barnet drags the council to court over this. If anyone living in Barnet is reading this and would like to, please get in touch with Inclusion Barnet, your friendly neighbourhood Disabled Peoples’ Organisation (DPO).

There are over 100,000 people in England and Wales living in care homes and nursing homes funded to be there by the taxpayer. That’s more than the population of Worcester. Most are funded through their local council’s Adult Social Care budget. A social worker will have conducted an assessment of their care needs, and a decision will have been made that those needs are to be met in a care/nursing home.

Given what we’ve seen with the CCGs, and Barnet Council’s current thinking, are we confident that all other councils are consistently honouring people’s decisions about where they live? Do we trust that the right to independent living is respected? Are we certain that social workers and commissioners up and down the country are doing their job in a lawful manner?

Call me sceptical, but I wanted to check. I’ve got another database on the go, and I’m about halfway through. So far:
– I have 120 full responses
– 72 of which I have read through
– 12 of which I marked “N”: “Not Happy”

I’m awaiting and chasing another 83 responses. If the statistical distribution of dodginess holds, then I’m expecting to mark another ~ 25 as “N”.

Interestingly, this would bring the total “Not Happy” count to about the same as the CCG database a few years ago. Is there a deeper pattern to be found here, looking at the distribution of attitudes towards disabled people and how this impacts on control by statutory bodies? Does the geography overlap, showing that poor practice in one team may have the same cause or be otherwise linked to poor practice in another team? In short, why?

Why do I live in a world where I need to spend most of my week (when I have spare energy) checking that people are doing their jobs right and not pushing people similar to me into institutional settings against their choice, only to find that in some places it really is that bad? All answers to @perry_fleur

More importantly, how do we fix this? Taking things one policy at a time will have an impact. Challenging one dodgy CCG or council at a time will make a difference. But, having read approximately 130,000 words of Choice policy bullsh*t over the past 3 years, I would like something a bit more conclusive.

We need an Independent Living Act.

We need a law we can point to and say “This is my home. This is my life. You are duty-bound to respect that.”

We need a law we can point to and say “Why do you think it’s OK to take that control from me, and place me somewhere I have less control over my day to day life? That’s not OK.”

We need a law we can point to and say “My right to independent living is a Right to Independent Living.”

We need a law we can point to and say “It’s your job to make sure I can live my life the way I choose. It’s your job to take barriers down, not build them.”

We need an Independent Living Act.


Not to be sneezed at

Last Tuesday: starting sneezing and coughing a bit

Thursday: realised it was probably early tree pollen

Friday: rang prescription ordering direct service (POD) to hear snooty message that said “please call back when we’re less busy” and was cut off. Three times.

Monday: got cut off twice. Sneezed. Wrote email to CCG asking them not to cut people off, copying in Healthwatch.

Wednesday: rang again and followed new instructions to request call back. Tweeted to say thank you for adding call back option. Received no call back.

Thursday: sent passive aggressive tweet saying a same day call back service only works if you call people back. Warned that if left waiting, I’d start sending FOIs.
Got called by a manager, who revealed that 2 responses to my email had been eaten by my Junk box, ordered my prescription, and assured me that they are ready for every eventuality following Brexit (time will tell).

The delivery takes 5 working days, and the med takes a few days to kick in, so I’m due to stop sneezing a week Monday. Yay.

Hopefully nobody else will get cut off, and everyone can have their antihistamines when they need them. Atchoo!

Dear NICE, it’s not 2004

TLDR version: NICE’s cost threshold for recommending a new treatment hasn’t changed since McFly were in the charts. The effects of inflation over the last 14 years mean that the amount we are willing to spend on new treatments seems to have been cut by almost a third. This means that some treatments which may be cost-effective have been rejected by NICE. Is this cost threshold relevant, evidence based, and lawful in 2018?


We’re still waiting for NICE to release their final recommendation on Nusinersen, the first targeted treatment shown to help children with Spinal Muscular Atrophy (a muscle-weakening condition I happen to have) to gain and keep muscle strength.

It’s expensive, and unless a miraculous deal has been struck by the manufacturer, it’s likely NICE will continue to say it’s too pricey for the NHS.

Funding every high-cost treatment would be impossible; the NHS does not have limitless resources. How much should be spent on the NHS is a political decision, but what to do with the money that the NHS has is a matter for local Clinical Commissioning Groups (CCGs).

NICE is tasked with gathering evidence, assessing costs, and providing recommendations to CCGs which will guide their decisions. If NICE recommend a treatment, a CCG would be likely to provide it; if NICE recommend against a treatment, a CCG would be unlikely to provide it.

In this way, NICE are a public body which holds significant influence over decisions which affect people’s lives. Their decision-making process needs to be fair, evidence based, and transparent, to ensure public trust, good commissioning, and, as lives are at stake, stay within the Human Rights Act’s Article 2: Right to Life.

NICE’s Technology Appraisal process tries to balance patient benefit against cost. Patient benefit is measured in units of Quality Adjusted Life Years; QALYs. What a QALY is and how you calculate one is an arguable point, but for the rest of this article, I ask you to temporarily accept it as a concept.

Cost is more easily measured, in £s. NICE’s SOCIAL VALUE JUDGEMENTS, Principles for the development of NICE guidance, Second edition (NICE, 2008) states: “… in general, interventions … less than £20,000 per QALY gained are considered to be cost effective.”

Yes, the line has to be drawn somewhere; but why there? I asked NICE via Freedom of Information request:

What is the evidence based rationale behind this figure of £20,000 per QALY being used as a general guideline for cost-effectiveness?

NICE does not hold information relevant to this question.

NICE has used a range of an incremental cost-effectiveness ratio (ICER) between £20,000 and £30,000 per QALY since the technology appraisal programme was established. This figure was agreed based on expert opinion in the early years of NICE as a reasonable benchmark and was set down in writing in 2004. It was formalised in 2004 with the publication of the first methods guide which was subject to public consultation. We have also consulted on updates to our methods and processes each time we have made substantive changes to them.

We use the quality adjusted life year (QALY) to measure the clinical and cost-effectiveness of specific technologies as we need to have a standard, objective approach to measuring and comparing the effectiveness of a wide range of products across many different conditions. The application of the QALY in the technology appraisal process was adopted following consultation with our stakeholders and with approval from the DHSC. We consider that it is the most rigorous and proven method of assessing the effectiveness of high cost treatments in order to make evidence-based recommendations about their use within the NHS.

You can access the 2004 methods guide using the national archive:

Does this figure change with inflation? Does it change according to the financial realities of the NHS at the time of decision making?

No, the figure of between £20,000 and £30,000 per QALY does not change.

Shocking though it may seem:
– NICE does not appear to hold evidence to support their cost threshold
– It is not tied to any economics within or outside of the NHS
– It has not changed in almost a decade and a half

Is this figure of £20,000-30,000 per QALY relevant in 2018? Is it lawful? I don’t think it can be called current.

If we accept momentarily that £20,000-30,000 per QALY was once relevant, what has been the impact of it remaining static for more than 14 years?

Over that time, GDP has increased by 62% (ONS), and inflation has increased costs by more than 46% (Bank of England). Using inflation alone, we can say that this threshold seems to represent a real-terms cut in funding for new medicines by about a third.

If the cost threshold had tracked inflation, it would have been as follows:

Year Threshold
2004 £30,000.00
2005 £30,847.25
2006 £31,832.99
2007 £33,197.56
2008 £34,521.38
2009 £34,338.09
2010 £35,922.61
2011 £37,792.26
2012 £39,006.11
2013 £40,191.45
2014 £41,140.53
2015 £41,547.86
2016 £42,268.84
2017 £43,788.19

[Thanks to Bank of England website: ]

Keeping the cost threshold the same means we could be missing out on cost-effective treatments. Some treatments were not recommended, but may have been recommended and routinely offered on the NHS if the threshold had tracked inflation.

Looking back through NICE’s rejected technology appraisals, these are:

– Fludarabine, a leukemia drug
– Pegaptanib, a treatment for wet age-related macular degeneration (a cause of sight loss)
– Sequential bilateral cochlear implantation, devices to restore some hearing in deaf children and adults
– Imatinib, a drug for stomach cancer
– Erlotinib, for advanced lung cancer
– Ranibizumab, treatment for diabetes-related sight loss
– Fulvestrant, a breast cancer treatment
– Dasanitib, for treatment-resistent leukemia
– Fluocinolone acetonide intravitreal implant, treatment for diabetes-related sight loss which is not responding to usual treatment
– Naltrexone–bupropion, treatment to aid weight management
– Eribulin, a treatment for advanced breast cancer

[Data from NICE website:
put into an Excel spreadsheet for ease of use: Not recommended by NICE ]

These are treatments which were demonstrated to NICE to be clinically effective; they do what they are supposed to do. However, they cost more than the fixed cost threshold, but less than an inflation tracked threshold. Can NICE justify refusing to recommend these treatments?

Given that NICE’s decisions influence real-world treatment pathways, and that many of these drugs are for life-extending cancer treatments, it could be considered that NICE has duties under the Human Rights Act’s Article 2: the Right to Life.

Has NICE met its duties? Are NICE’s decisions evidence based and proportionate? Are there clear reasons behind their decisions?

I’d like to see NICE do more to demonstrate that.

Addendum: You may now question what a QALY might be and if it’s actually the best way to measure how well a treatment works. I’m asking that very question right now.

Is NICE playing nice?

This post may be distressing to some readers. It discusses the medical care of young children. If you want to keep reading, at least grab a strong cup of tea.
The National Institute for Health and Care Excellence makes recommendations on what should and shouldn’t be funded on the NHS. Today is the close of their consultation on Nusinersen, a treatment which evidence shows helps very young children and school age children with SMA (a muscle-weakening condition I happen to have) to gain and keep muscle strength.

NICE are currently not recommending this treatment on the basis of cost.

But how have they made that decision? Where do you draw the line? Where do the figures come from?

There are children out there, not so different to me, who may not survive into adulthood without this treatment. Though we can’t fund every treatment ever invented, this is a serious decision, that means serious people need to make a serious case on both sides with serious evidence to back up what they’re saying.

This isn’t a “one person made a call we disagree with” issue. This is a question of how the right to life of these kids and others is respected and protected, not to mention the right to life of anyone who may one day need a novel treatment. It’s a big question.

Here is my consultation response.


To whom it may concern at NICE

I was dismayed but unsurprised by your proposal not to recommend the use of Nusinersen in adults with Spinal Muscular Atrophy (SMA), given the need for more studies to be undertaken to demonstrate its efficacy.

I was shocked by your proposal not to recommend the use of Nusinersen in children with Spinal Muscular Atrophy (SMA), given the body of evidence that shows the treatment has clear clinical benefits.

Looking deeper into your decision making process, I remain shocked.

Please find below a summary of my thoughts and some questions I would be keen to see answered. I look forward to your reply and would be happy to meet with you to discuss this further.

Yours faithfully

Fleur Perry

Adult with SMA type II


Question: By what processes does NICE take account of its duties as a public authority to act in a manner consistent with human rights?

These children, like all children, have a right to life.

I draw your attention to the UN Universal Declaration of Human Rights, Article 3: “Everyone has the right to life, liberty and security of person.” (UN, 1948)

And also to the UN Convention on the Rights of Persons with Disabilities, Article 10: “Right to life

States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.” (UN, 2006)

These aspirations are realised through the Human Rights Act 1998, Article 2: “Right to life

Everyone’s right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law.” (, 2018)

Publicly available information from the Equality and Human Rights Commission states “Public authorities should also consider your right to life when making decisions that might put you in danger or that affect your life expectancy.” (EHRC, 2018)

NICE recommendations are used to influence real-world decisions and patient pathways; NICE has a duty under the HRA to act in a way that protects life.

Nusinersen has been shown to protect the life of children with SMA. It is the first and only treatment of its kind designed to do so. Decisions which impact patient access to this drug affect these patients right to life. Despite this, the right to life does not appear to be not explicitly mentioned in NICE’s consultation.

If NICE were to not recommend a life-extending treatment without sufficient justification, NICE could be found to be not acting in accordance with the HRA.

The NICE website does show that NICE is aware of its duties under the HRA, though offers little detail as to how it ensures it discharges them.



“The Human Rights Act 1998

  1. When public authorities such as NICE carry out ‘functions of a public nature’, they have a duty under the Human Rights Act 1998 not to act incompatibly with rights under the European Convention for the Protection of Fundamental Rights and Freedoms. The Equality Act’s

public sector equality duty uses the same definition of functions of a public nature as the Human Rights Act 1998. The Human Rights Act places responsibility for ownership of human rights matters on every public body and employee and requires active consideration of whether decisions have any implications for human rights.”

“NICE’s compliance with the Human Rights Act

  1. NICE achieves compliance with human rights requirements primarily through:
  • a robust procedural framework for developing guidance
  • an equality analysis process that also looks at the situation of groups in addition to those who share the characteristics protected under the Equality Act
  • asking advisory bodies to satisfy themselves that their decision making procedure is fair and transparent, that decisions do not discriminate against a group that is not a legally protected group,

and, if they do, whether that discrimination is legitimate

  • obtaining legal advice when an issue arises that could potentially lead to challenge.”


Despite these assertions, the procedural frameworks (NICE, 2017, 2017, 2018) underpinning the Nusinersen decision do not appear to discuss how to make decisions which respect every individual’s human rights, including right to life.

Within the Nusinersen consultation document (NICE, 2018), there appears to be no explicit mention of human rights or right to life.


In all human rights discussions, the needs of the individual must be weighed against the needs of collective.

NICE’s approach to this is to calculate the cost relative to the benefit; incremental cost-effectiveness ratios (ICERs) per quality adjusted life year (QALY).

A very high cost treatment which did not have a significant effect on health related quality of life (HRQL) would have a large ICER per QALY. The inverse is also true.

Funding very high cost treatments which have very small benefits is unsustainable, and so the wider economic picture must be balanced against the needs of an individual or group of people. Both must be carefully assessed and considered in a robust decision making process.

In this case, we are establishing whether it would be financially sustainable for the NHS to give children with SMA access to the only life-protecting treatment of its kind.

NICE’s SOCIAL VALUE JUDGEMENTS, Principles for the development of NICE guidance, Second edition (NICE, 2008) states:

“NICE has never identified an ICER above which interventions should not be recommended and below which they should. However, in general, interventions with an ICER of less than £20,000 per QALY gained are considered to be cost effective.”

Question: What is the evidence based rationale behind this figure of £20,000 per QALY being used as a general guideline for cost-effectiveness?

Question: Does this figure change with inflation? Does it change according to the financial realities of the NHS at the time of decision making?

Given that the cost-effectiveness of Nusinersen is assessed through the ICER per QALY measure, it is important to ensure that the QALY measure is reflective of the individual experience of these patients and those around them.

However, there does not seem to be a consistent definition of a QALY used across all NICE decision making.

Measurement of quality of life of very young children has been pointed out in the Committee papers (NICE, 2018) as extremely difficult. Similarly, it was noted that the PedsQL may not be an appropriate tool to measure outcomes which matter to school-age children with SMA.

The approach to collecting data about health related quality of life of these children focuses on adverse events (such as respiratory infections), hospitalisations, motor milestones (rolling, sitting, lifting objects…), and interviews with a small number of clinical practitioners.

There is no publicly available summary of the interviews with the clinical practitioners. Though it is important to maintain doctor-patient confidentiality and to allow the clinical practitioners to feel they can speak freely without fear of public/media misinterpretation, the lack of transparency feels disconcerting.

Request: NICE seek the permission of the clinicians to publish a bullet pointed summary of the key points.

There appears to be no explanation of how the clinicians views and measured outcomes were converted to a numerical value; the QALY.

Given the importance of the QALY to the ICER per QALY measure, and thus to whether or not children will be treated with Nusinersen, it is important that this calculation is transparent.

Question: By what process was the information gathered converted into a QALY?

NICE has compared Nusinersen against best case usual care (henceforth best possible care) to give a value for the ICER.

This neglects to reflect the reality of the situation for children with SMA and their families. Many of the parent submissions talked of the difficulties associated with lifting a growing child, lack of sleep, getting the right equipment and making adaptations to the house. Best possible care would include steps to address these issues being taken by non-NHS bodies acting appropriately in a timely manner, providing and advising on equipment, housing, social care, respite and so on. The submissions you received reflect that this does not always happen smoothly. Best possible care is not the same as currently available care.

Similarly, best possible care is not always delivered by the medical team around the child. Within the company submission (Figure 34 and surrounding discussion), it is acknowledged that the UK standard of care in practice is not the same as that in other countries, highlighted by data from Italy. The UK does not presently deliver the best standard of care, which has a significant impact on patient survival. This must be addressed outside of the present discussion.

Given that best possible care is not uniformly experienced by children with SMA in the UK at present, it does not seem logical to use it as a direct comparator when looking at Nusinersen.

The “Green Book” from HM Treasury (HM Treasury, 2018) sets out a suggested process by which options of how to spend public money can be appraised. It recommends looking at an option compared to business as usual (BAU). In this situation, that would be a model of care which takes into account gaps in provision and waiting times for equipment, advice, and treatment, and the effects this has on children with SMA and their families.

Request: NICE produce a BAU model of care to use as comparator to Nusinersen.

The decision on whether or not to recommend Nusinersen and any medical technology must happen through a process which is fair, transparent, and uniformly applied.

I request that NICE not only review the decision to not recommend Nusinersen, but also review the process by which such decisions are made so to make it clearer how NICE carries out its duties.


A final word on quality of life

The submissions to NICE reflected the downsides of having SMA. However, it also seems important to mention that when health is stable, and the correct support is available, a good quality of life can be achieved.

Here are some examples from adults with SMA:

Fleur Perry (me): – 3 highlights from the past year: Seeing the Killers play live at the O2, meeting some of my heroes at London Comic-con in full cosplay with 2 of my best friends, meeting Baroness Jane Campbell at the House of Lords

– the highlight of the past month: Helping put together a last-minute surprise celebration for a family event complete with gold-edged invitations, and the looks on my rellys’ faces as we laughed and ate and drank altogether for the first time in 4 years.

– something you’re looking forward to?: Finishing my Physics degree and possibly starting a Masters


[Others redacted as permission granted to share with NICE only]




UN (1948) The Universal Declaration of Human Rights. Available at (Accessed 1 September 2018).


UN (2006) Convention on the Rights of Persons with Disabilities (CRPD), Article 10 – Right to life. Available at (Accessed 1 September 2018). (2018) Human Rights Act 1998. Available at (Accessed 1 September 2018).


Equality and Human Rights Commission (2018) Article 2: Right to life. Available at (Accessed 1 September 2018).


NICE (2016) NICE’S EQUALITY OBJECTIVES AND EQUALITY PROGRAMME 2016-2020. Available at (Accessed 1 September 2018).


NICE (2017) Medical technologies evaluation programme process guide [PMG34]. Available at (Accessed 1 September 2018).


NICE (2017) Medical technologies evaluation programme methods guide [PMG33]. Available at (Accessed 1 September 2018).


NICE (2018) Guide to the processes of technology appraisal [PMG19]. Available at (Accessed 1 September 2018).


NICE (2018) Appraisal consultation document, Nusinersen for treating spinal muscular atrophy. Available at (Accessed 1 September 2018).


NICE (2008) SOCIAL VALUE JUDGEMENTS, Principles for the development of NICE guidance, Second edition. Available at (Accessed 1 September 2018).


NICE (2018) Single Technology Appraisal, Nusinersen for treating spinal muscular atrophy [ID1069], Committee papers. Available at (Accessed 1 September 2018).



Tempus fugit

It’s been a little over a year since I came home from a girly weekend to find 3 messages from Martyn Sibley, talking about taking my disability rights journalism up a gear.

I think we can say that that happened.

It might seem like I’ve been waffling on (mostly about accessible housing) forever, but it’s only been 3 years. 3 years ago, I never would have dreamed that I’d help uncover a Human Rights question. I never would have expected to learn new resilience techniques to deal with suicide statistics and coroner’s reports unexpectedly popping up in my Inbox. I never would have imagined working with such great people, learning something new from them every day. I never would have thought that I’d be to-ing and fro-ing to London every so often to try and fix the problems I’ve found. I never would have imagined I’d speak on national radio, or have a framed clipping of Private Eye on the wall above my desk. Back then I didn’t have a desk.

What will the next 3 years bring?

I’ll enter another decade, my arms will weaken, my knowledge will grow – beyond that I haven’t the foggiest.

A piece of history

This morning I’m doing some background research, by far my favourite activity as Editor of Disability United. Wandering and wondering my way through books, web archives, legislation, forgotten corners of blogs, anywhere I can, looking for that odd phrase that will put a question into focus or that bit of data which will end an argument before it starts.

It probably sounds incredibly dull but there’s something very zen about it.

And when you find what you’re looking for, it’s like finding the last chocolate in a box of empty wrappers.

And when you find what you weren’t looking for but should’ve been, it’s like finding that the supposedly empty box of chocolates has another layer.

I’ve been researching around the topic of Independent Living, as Disability United have some ghastly figures to announce in the New Year. On my travels, I have found this, the original Aims of UPIAS:

I’d read about them before, but the original document is a magnificent thing. Read it again, even if you’ve read it a hundred times before. This document has stood the test of time; though it was written in 1974, and there have been changes in language, politics and some important real world changes in the experience of being a disabled person, many of the barriers to full participation that they name are still excruciatingly present in some form.

UPIAS members, I salute you.

Last call! Slapdash submission made it in time

I’ve never been keen on Twitter, but this tweet turned my day upside down yesterday:

last chance saloon

Frenzied emailing, tweeting and messaging ensued, as Local Plans could be the solution to the accessible housing crisis if guidance is updated.

I don’t know how many of my accessible housing contacts were able to make a submission, but mine got there.

local plan inquiry done

Here’s my tuppence in full:

Written submission on Local Plans by Fleur Perry 27 6 2016

If anyone has information on accessible housing or would like to set up a pan-discipline Accessible Housing Information Network, please get in touch


My initial response was “sugar” but I know a few people who found better words, before sinking into a well of dismay, shock, pain at betrayal, and a deep sense of impending doom.

Some of these sentiments I share, however I have a strong optimistic core which will take more than the biggest political upheaval for a lifetime to shake. Call me brave, call me stupid, call me ignorant of the magnitude of the situation, call me unfeeling, call me anything you like, but I’ve spent a significant portion of the day patching up broken disability rights Bremainers and will continue to try to do so. There’s only a limited number of disability rights campaigners out there, and we are going to need every one of them campaign ready.

What’s happened has happened, and that can’t be changed. What doesn’t change is the fact that disability rights is important. What hasn’t changed is the fact that good care costs less than bad. What hasn’t yet changed is the legislation, and there needs to be people ready, willing and able to protect the interests of disabled people when legislation does change.

Get an early night, eat something healthy, watch that boxset. Wear something silly this weekend and go do something fun. Take care of your friends, they need you. Don’t move to Scotland, we need you.

Never give up, never surrender.