When Devices go Bad – or The Pump too Tough to Die – by Jennie Musson

We all use technology in our lives, to a greater or a lesser extent, from the ubiquitous mobile phones, to our Digi-boxes and coffee machines. Many of us also rely on technology to manage our impairments or medical conditions. This technology can be incredibly effective in assisting us to stay well and enabling us to have as normal a life as possible, but what happens when technology “goes bad”? Well, one of our staff members got to find out – and here is her experience….

When I think of technology “going bad”, I must admit that one of the first things that springs to mind is either the film, “I Robot”, or the (in)famous scene in “The Young Ones” where washing machines rebel when faced with Neil’s sweaty socks.

What brought me to write on this subject was my own encounter with some new technology to help me manage my type 1 diabetes. I have been an insulin pump user since 2007 and, like many people, have found the benefits of insulin pump therapy have revolutionized my care and improved my quality of life, compared to multiple daily insulin injections.

Having had my current insulin pump almost 6 years, it was decided by the good folk at Bournemouth Diabetes and Endocrine Centre (BDEC) that I was in need of an upgrade and would I like to trial a new insulin pump and sensor system for a couple of weeks. To say I bit their hands off would be a massive understatement, as in the wonderful wacky world of type 1 diabetes, hardly anyone ever gets offered the chance to try out a sensor system on the NHS, as they are prohibitively expensive. Sensors are meant to be used  in conjunction with an insulin pump, continually monitoring blood glucose and sending these results to the insulin pump. When blood glucose is about to fall too low, the insulin pump stops delivering and alarms, which is a brilliant feature for people (like me) worried about having very low blood glucose in their sleep and potentially going into a coma. This is a safety feature, supposed to give people peace of mind and better control with no dangerous lows. So far, so good.

I spent about four hours at the hospital, meeting the lovely smiley medical rep and discussing the system with the diabetes nurse and left, clutching two large carrier bags with my pump swag and with a nice shiny new sensor and new pump attached to me, feeling nervous but quite smug at the same time.

Things were going great, with the pump alarming and vibrating before the blood sugars hit rock bottom and I was very pleased that everything worked as it should.

It wasn’t until that night when the pump and sensor bit back. It started, innocuously enough, with the pump alarming and telling me insulin had been suspended, as blood glucose was too low, although I did not feel ill as I usually do when this happens. I checked my blood – not low at all. I thought this was a bit wierd, but cancelled the message and went to bed, blissfully unaware of the techno-hell that night would bring.

“Beeeeeep” “Brrrrrrr” “BEEEEEEEP!!” woke me up from deep slumber at 12.30am. Completely disorientated, I fished the pump out and jabbed at it while squinting short-sightedly at the display. “Insulin suspended, low blood glucose”, the thing helpfully informed me. Cursing, I did a blood test – nowhere near low. Muttering wrathfully, I cancelled the message and went back to sleep.

“BEEEEEP! BRRRRRR! BEEEEEP!” woke me again half an hour later with the same message. Again tested my blood as instructed by the electronic tyrant – with the same results – no lows. In fact, too high. Yet again, I cancelled the message and went back to sleep , convinced that Chairman Mao had nothing on this insulin pump.

And so it went on: “BRRRRRR! BEEEEEEP! BRRRRR!!” all night long.

Finally, when it had woken me up for what felt like the 18th time at 5am, I dragged it out, shouting “WHAT???” at the pump screen, as though it were a recalcitrant toddler. I briefly considered hurling it out of the window, but was forced to dismiss this idea as it was unfortunately attached to me and would have resulted in a couple of broken legs.

Two hours later, the accursed alarm started again, this time telling me to change the sensor. This was the final straw. Enough was enough. I marched downstairs, ripped out the sensor and disconnected the pump, reverting to my old (and wonderfully silent) one. Ah, relief! Even then, the thing would not die and kept beeping and vibrating in its box where I had carefully placed it. I wondered whether it would still be heard if I buried it under 2 feet of concrete, but reluctantly conceded that BDEC would want it back at some point in the future. At least with the monster stashed in its box, I could walk away and not have it follow me, wailing and vibrating, like a hyperactive child in a sweet shop.

I remain unsure as to whether the issues I had were mechanical or whether they were a result of my inexperience with the system, but I intend to try and follow the old maxim “At first, if you don’t succeed, try again” (at least when my eye bags have receded). After all, it’s a matter of pride – who likes to be beaten by a mere machine?

SPECTRUM’s Summer 2017 Newsletter is out


The June edition of the SPECTRUM newsletter is out now! Packed full of interesting and informative articles, like “To Deny or Not Deny Disability” by Vic Finkelstein, news about our exciting new training and consultancy services, and why Disability Equality is good for business and more!

You can read the Newsletter by clicking on this link.

What is the Purple Pound?

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The power of the purple pound explained

At SPECTRUM we have talked about the spending power of Disabled People for a very long time.

The point being that there are a lot of Disabled People in the UK, they spend money – and no business, big or small (profit making or not-for-profit), can afford to ignore THAT many people, and THAT much ££££££.

As long ago as maybe 2010, Disabled People and others started to try to compare the spending power (and therefore influence) to other groups of people. For Instance, the spending power of Older People is usually referred to as the Grey Pound, or Silver Pound.

In the last few years the spending power of Disabled People has become known as the Purple Pound

purple-pound-sign (1)In the UK, it is thought that some 7 million Disabled People people are of working age, and overall there are 12.9 million Disabled People in total in the UK. This all adds up to an awful lot of spending power!

The “purple pound” is reckoned to be worth around £249bn to the UK economy.

Do disabled people have much spending power?

The UK’s Disabled People are said to have disposable income collectively worth nearly £250bn. Campaign groups regularly cite this figure and find it useful to remind businesses and politicians that Disabled People are a sizeable economic, and political force and should not be forgotten.


Disability consultant Mary-Anne Rankin says that businesses should think inclusively from the very beginning of any product or service they’re starting. She says:

“You’ve got to think about the widest possible usage of your services and explore innovative ways of enabling everybody to benefit from them. Because after all if your customers can benefit you’re going to make more money.”


As with why it is the colour purple (see below), similarly many people scratch their heads as to how the £BN figure was derived. All seem to agree it came from the DWP in 2004, but even they say the maths has been lost in the 10 years since it was first suggested. DWP says it was created using raw data from the updated Disability Discrimination Act in that year, alongside data from the Family Resources Survey of 2002-2003.

Whatever the variously quoted £BN’s, the fact is that we are talking a huge amount of money.

How does the Purple Pound compare to other groups?

  • Black and ethnic minority spending power, £300bn – 12% of the population of the UK, according to the Institute of Practitioners in Advertising, IPA, 2012.
  • Consumer power of the gay community, £70bn to £81bn – thought to be 6% of the UK, according to OutNow Consulting, 2007.
  • Overall UK disposable income of its 25 million households plus non-profit sector, 1.078 trillion pounds, according to the Office for National Statistics, ONS, 2012.

If you would like to read more – including why it is called the Purple Pound, follow the following links:


So – there you are – The Purple Pound

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What is a User-Led Organisation?


SPECTRUM’s Guidance concerning: what are the unique characteristics of a ULO?

SPECTRUM Centre for Independent Living is an organisation run and controlled by Disabled People. We formed in 1984 as one of the first organisation in the UK that were run and controlled and managed by Disabled People.

We are therefore a User Led Organisation (ULO) and have been since our formation, and indeed, before the term ‘ULO’ was even coined.

With this history and experience, we have built up a range of resources and expertise to guide organisation that wish to be a ULO, and for commissioners who want to encourage the development of more ULO’s. We are able to provide training and consultancy services on request.

This information leaflet has been developed to help interested parties to understand what the key issues are in creating an effective and engaging ULO.

A few years ago, the Department of Health developed a ‘Design Criteria’ of 21 criteria for ULO’s to aspire to. Whilst SPECTRUM broadly supports these, we recognise they are complex and can be off-putting to many. However, we also know that being an effective ULO is a lot more than just having a majority of the organisation’s user-base on the Management Committee or governing bodies.

SPECTRUM has worked with many ULO’s, organisations wishing become a ULO and with commissioners who want to help develop a ULO. As a result of this work we have developed this guidance which helps new and evolving ULO’s to understand what the essential and desirable characteristics of a ULO are.

What is essential for a ULO? and what is just desirable for a ULO?

Understanding what a ULO is:

The starting point for understanding what a ULO is, is the definition developed from the Department of Health’s User-Led Organisation project, which defined a ULO as:

an organisation that covers all local Disabled People, Carers and other people who use support either directly or via establishing links with other local organisations and networks”

It is recognised and accepted that not all new and emerging groups would meet all of the design criteria at the early stages of their development, although they would normally be expected to be working towards meeting them over time. The Department of Health policy also acknowledges that these criteria may be met in a variety of ways according to local demand, resources and circumstances.

It is also important to note that it is not strictly necessary for a ULO to describe itself as such in order to meet the criteria. What a group does, and how it is run, are more important than what they call themselves.

SPECTRUM has observed that the design criteria were not necessarily a good fit for all types of groups (especially non-disability groups). To fix that, we have adapted the criteria in consultation with other ULO’s so that they make more sense in the specific context of ULO development.

These revised criteria are detailed below, providing clarity and comment about what is an essential characteristic and what is desirable or a longer term aim:




Disability Manifesto 2017: The NHS

With just a few more days till the General Election, SPECTRUM Centre for Independent Living is today focusing on the NHS. The aim of the Disability Manifesto is to highlight the issues that Disabled People feel ALL political parties should commit to, following the General Election. We welcome your feedback on our Facebook page or via Twitter using the hashtag #DisMan17



Disabled People, particularly People with Learning Difficulties or Mental Health Conditions, experience significant and persistent health inequalities and are likely to die younger than other people.i They are also much less likely to receive health checks, screening tests and other routine healthcare treatment.

Disabled People are less likely to report positive experiences in accessing healthcare services.

Despite a commitment by the Government to make improvements to the provision of mental health services, considerable shortcomings remain. Disabled adults are more likely to report poor mental health and wellbeing than non-disabled adults.

There is also considerable evidence of low levels of disability awareness among NHS staff, inadequate healthcare treatmentii and access barriers to health services.iii

We call on all political parties to commit to eliminating health inequalities faced by Disabled People by 2025. This is a challenging target but one that can be achieved if the will is there to do so.

We also call on all political parties to commit to ensuring that Disabled People are able to access NHS services on an equal basis as everyone else. This can be achieved as part of a wider improvement programme – particularly in primary care, where many people face difficulty accessing services because of restricted opening times and procedures.

We also call on all political parties to commit to ensuring that mental health services are given equal priority to physical health services in the NHS.

We also call on all political parties to guarantee to close, within the first year of the next Parliament, the remaining hospitals in England where People with Learning Difficulties are still being sent, despite promises to end the practice in the wake of the Winterbourne View abuse scandal.

If you want to read the full manifesto, please visit our Disability Manifesto page.

i Equality and Human Rights Commission (2010) How Fair is Britain, Equality, Human Rights and Good Relations in 2010’, Chapter 6; Review of Mental Health and Learning Disability (Northern Ireland) (2005) Equal Lives Review of Policy and Services for People with a Learning Disability in Northern Ireland, p. 29; NHS Health Scotland (2004) People with Learning Disabilities in Scotland: The Health Needs Assessment Report’;

ii Disability Rights Commission (2006) Equal Treatment – Closing the Gap. disability-studies.leeds.ac.uk/files/library/DRC-Health-FI-main.pdf

iii Disability Rights Commission (2006) ‘Equal Treatment: Closing the Gap’; Redley M et al (2012) ‘Healthcare for men and women with learning disabilities: understanding inequalities in access’, Disability and Society, Vol. 27, No. 6: 747–759; BMA (2014) ‘Recognising the importance of physical health in mental health and intellectual disability’.

Other Methods to Follow what SPECTRUM Thinks & Does


SPECTRUM uses a variety of Social Media platforms to communicate with, including:

FaceBook: https://www.facebook.com/SPECTRUM.CIL/

Twitter: https://twitter.com/SPECTRUMCIL

Linkedin: https://www.linkedin.com/in/spectrum-cil-42965ba5/

YouTube: https://www.youtube.com/user/southamptoncil

Why not try out all these different flavours of SPECTRUM!

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Baroness Jane Campbell and Sian Vasey Discuss SPECTRUM CIL’s Disability Manifesto 2017

SPECTRUM Centre for Independent Living was delighted to welcome Baroness Jane Campbell, a cross bench peer in the House of Lords and Sian Vasey, a Disabled film maker, to Southampton to discuss all things Independent Living related with our Chief Executive, Ian Loynes. They covered a wide range of topics from employment to welfare reform, not forgetting Brexit of course. You can watch highlights of their conversation below.

All of them agreed that none of the political parties were yet offering a comprehensive disability strategy that would enable Disabled People to enjoy true equality within society.

If you want to read the full manifesto, please visit our Disability Manifesto page.