The quadruple amputee who needs the correct prosthetic
Summary: When Alex Lewis spoke to BBC Ouch in January about becoming a quadruple amputee, what shone through was his remarkable positivity. This remains - but his rehabilitation is being hampered by the need for prosthetics unavailable to him.
"I don't want to be on benefits or care allowance. It feels like they are shackles around you," Mr Lewis, from Stockbridge, Hampshire, tells the Victoria Derbyshire programme.
In November 2013, what he thought was "man flu" turned out to be a streptococcal infection (type A) that had penetrated deep into his tissues and organs.
It had triggered blood poisoning, or sepsis, a life-threatening condition that causes multiple organ failure, and left him in need of facial reconstruction and the amputation of four infected limbs.
Since then, he has remained his positive self - but the next step in his search for independence is proving difficult to overcome.
While his ambitions remain grounded in the every day - the ability to walk to the shops, to drive and to earn money for his family - the prosthetics that could potentially make this a reality are not available to him on the NHS in England.
The micro-processor knee joints - which would allow him to walk with stability - are only provided to some injured veterans, as well as NHS patients in Scotland who meet certain criteria.
"What we'd like to do is speak to the NHS in England and alter the system," he says. "If they were willing to help financially, then more people would be getting the right prosthetics, but it's trying to make them listen."
Mr Lewis wants the NHS to consider the need for such prosthetics on a case-by-case basis, to take into account unique circumstances such as his.
While NHS England could not comment on his specific case, it stated that earlier this year the independent Clinical Priorities Advisory Group had "concluded there was insufficient evidence to support routine commissioning [of micro-processor knee joints]", though there was "the intention to consider it again over the coming months".
Mr Lewis believes, however, that the current alternatives limit his capabilities.
"Rocker pylons [prosthetics on a short pole, with a large rocking foot] are a great training aid on a flat surface - but when it comes to walking around in the real world, they are not that good," he says.
He says they have developed little since the 1960s, and make him feel vulnerable on the rough terrain of the farm where he lives.
The second option is stubbies, or "elephant feet" as Mr Lewis likes to describe them - basic prosthetics that do not require a knee joint and can be attached directly to a prosthetic foot.
But they are not free from problems. "With no knee joint, your hips have to do all the work - potentially causing long-term wear and tear," Mr Lewis says.
"If I screw my hips up, I can't walk."
As a result, they compare unfavourably to the micro-processor knee joints, which his prosthetist, George Tagliaferro, says offer double leg amputees safety and control.
"The knee joints have sensors, allowing them to adapt to the environment around them. They know whether the user is going uphill or downhill, or ascending or descending stairs, and can react to make walking more stable," he adds.
"This all happens in a split second, and reduces the risk of the user falling." This is especially important for Mr Lewis, where any falls could lead to the damage of arm joints or his reconstructed elbow.
These benefits have led Mr Lewis to take it upon himself to improve his situation - characteristic of his attitude to life since the infection developed.
"Before I fell ill I was chronically laid back," he says, "and since falling ill I've become much more driven."
Since establishing a trust fund to help him raise the £165,000 needed for the knee joints, he says, he has received constant good will and support - including a donation from Coldplay front man Chris Martin.
His current total stands at £120,000. But even if he reaches his goal, this could be far from the end of the fundraising process.
The prosthetics only come with a five-year guarantee, meaning parts - or even whole joints - may need replacing thereafter.
"The costs are not viable in the long term," he says. "It is not as easy as saying, 'Here is the money, go and get yourself a new set of legs.'"
For Mr Lewis, though, setbacks are something to overcome.
In October, he will begin ground-breaking facial reconstruction surgery to reform his lips, with operations taking place every six months after for two years.
He is also learning to use a hand-cycle after being given one as a donation, even having a special sports arm developed to enable him to use it.
Once his training is complete, his goal is simple - to take it to the local pub.
Other recent news items:
- Doctors’ union finally agrees to spread the word
- Disability Politics UK: call to prioritise step free access
- Children with disabilities: targeted violence and hostility
- Dementia care: how social enterprises are developing products and services
- Adass spring seminar: four things you need to know
- The Disability Audit: the eight coalition policies that have hit disabled people
- DWP told to publish ESA deaths report, after two-year delay
- The struggle to find work when you have Down's syndrome
- PIP Delay Crisis Over, Claims DWP
- Meet Justin Tomlinson MP- New Minister For Disabled People
- A quick guide to new care minister Alistair Burt
- How to use your disability as a strength when applying for jobs
- Devastating impact of cuts on disabled people
- NHS ‘has wasted more than a year’ on latest bid to improve wheelchair services
- Five Thousand Disabled Adults Sexually Abused In Last 2 Years Says NSPCC
- ESA Claimant Takes On Maximus And Wins
- One in five benefit-related deaths involved sanctions, admits DWP
- Manchester United tell family with disabled son to watch Stockport instead
- Joint mental health commissioning strategy
- New parliament sees number of disabled MPs plunge
- Motability under spotlight over cuts to grants… despite £190 million reserves
- Disabled people ‘should come together in new national body’
- 'It's a great honour': Selby appoints UK's first mayor with learning disabilities
- Voluntary Community Social Enterprise Review website
- Cameron downgrades minister for disabled people
- Poor UK cancer survival rates linked to lack of GP direct access to scans
- Charity highlights role of siblings in supporting adults with a disability
- Queen’s Speech fails to mention social care funding
- Queen’s speech ‘suggests the worst is yet to come'
- TV industry must improve representation of disabled people
- The bionic suit helping wheelchair users get back on their feet
- New project to tackle mental health issues
- Equality watchdog contradicts football’s Premier League over access
- Schools 'must improve support for diabetic children'
- National Theatre plans shows on issue of disability
- Rise in mental health bed occupancy
- Watchdog writes to Man Utd after stewards confiscate walking aids from fans
- Government cuts ‘could see disabled people slide back to the bad old days’
- Disabled payment delay unlawful, judge rules
- The 'dragons' who want to help disabled people start their own business
- Boy, 12, wins £120,000 in damages after swine-flu jab left him 'severely disabled' by narcolepsy
- DWP ignores watchdog’s deadline over benefit-related deaths
- Man who cannot walk or talk called for jobcentre 'back to work' interview
- UK woman can ride bike for first time with 'world's most lifelike bionic hand'
- GPs to refer more patients with low-risk cancer symptoms under new NICE guidance
- Disability campaigners clash with police inside parliament over benefit cuts
- Indefinite Award DLA Transfer To PIP Will Start From July In Certain Postcodes
- Disabled children less happy with hospital care than peers
- ILF closure: Process has caused ‘fear, stress and anxiety’, say researchers
- Disability poverty rose sharply in fourth year of coalition
- UK services failing patients with dementia
- Shadow disability minister admits backing assisted suicide bill
- Disabled people's rights threatened by government cuts, campaigners warn
- BBC Three’s ‘Defying The Label’ Season
- From 'bloodied knees' to the House of Commons as a disabled MP
- Mental health patients sent hundreds of miles for beds as out of area placements rise 23 per cent
- Systematic over-medication blights learning disability care
- The Superhumans return to Channel 4
- Accessible Information Standard Approved
- Doctors demand return of lung cancer awareness campaign
- David O’Mar, 58, Found Fit For Work Two Weeks Before His Death
- World First Bionic Eye Gives Hope To Millions
- Seven-day NHS to include child mental health services, minister confirms
- Court hears appeal on ‘unfair’ PIP 20 metre rule consultation
- New report by Business Disability Forum cites lack of skills in line managers as major barrier to retention of disabled employees
- Tanni says 10,000 signatures could finally transform wheelchair services
- BBC3 presenter and journalist crowdfunding to transform the lives of people with disabilities in Ghana
- Disabled voters take pioneering legal action over election access
- Has disability sport lost its London 2012 Paralympics momentum?
- NHS Announce New Care Guidelines For Learning Disabilities
- Fresh evidence that ‘benefit scrounger rhetoric’ is causing hate crime
- Sanctioned Jobseekers With Mental Health Problems Are Not ‘Vulnerable’ Says DWP
- Clubs “Neglecting Responsibility” To Disabled Fans
- Latest Figures Show Massive Rise In ESA Sanctions
- ‘Bizarre’ figures raise fears over ministers’ plans for ESA
- School nurses ‘need better mental health training’
- Number of people developing dementia 'stabilising'
- Boy, nine, fitted with first prosthetic hand that can change grip with gestures
- Iain Duncan Smith criticises employers over disability employment gap
- Disability benefit sanctions soar by 30% in a year
- Thousands have died after being found fit for work, DWP figures show
- Goths at risk of depression or self-harming, research says
- Elderly 'ripped off' in mobility scooter market
- GPs are missing cancer in children - because they 'don't have enough training'
- IDS announces 'fitness for work' U-turn that was five years in the making
- People with autism and learning disabilities excel in creative thinking, study shows
- Starbucks apologises for telling woman she was not 'disabled enough' to use the toilet
- DLA Lifetime Award PIP Transition Started from 1 September in 29 New Areas
- Successful 'Fit for Work' Appeals at Highest Ever Level, Show DWP Stats
- Why is our justice system failing vulnerable people?
- UN investigating British Government over human rights abuses caused by IDS welfare reforms
- Coroners 'ground breaking' verdict: Suicide was 'triggered' by 'fit for work' test
- Schoolboy calls for more disabled characters in children's books
- The quadruple amputee who needs the correct prosthetic
- Welfare to work programme failing disabled and ill jobseekers, say charities
- Disabled fans 'delighted' as Premier League finally acts on access
- Two-thirds of adult social care requests rejected by local councils
- Independent Living Fund: Government silence 'suggests something to hide'
- UK employers report rise in mental health problems: CIPD study
- UN inquiry considers alleged UK disability rights violations
- Parliament's own disability group picks first non-disabled chair in nearly 50 years
- Dementia drug 'keeps patients out of nursing homes'
- Disability benefit cuts will actually make it harder for disabled people to find work,coalition of 60 charities warns
- Problems with the care and treatment provided by the NHS and/or difficulties in accessing health services?
- Consultation on the proposed new adult social care strategy
- The Leicestershire Advice Service for Social Care is here to guide you
- Minister: MPs must help 'open doors' for disabled jobseekers
- 'Homes not hospitals': learning disability care to move to community
- Equality Act 'simply isn't strong enough' for BSL-users, peers are told
- Disability Hate Crimes Rise 41% In A Year
- Companies fear employing people with learning disabilities, survey reveals
- DWP cuts specialist disability employment advisors in jobcentres by over 60 per cent
- Watchdog 'must do more to support disabled people to fight discrimination'
- ‘We must keep banging the drum,’ says bus campaigner after five-year fight for justice
- 2,000 disabled people wrongly declared ‘fit to work’ by DWP in just three months
- Local authorities 'spend close to nothing on mental health'
- Rock band with learning disabilities release first single
- NICE seeks to improve diagnosis and treatment of cerebral palsy
- Premier League clubs face legal threat unless disabled access is improved
- UK’s progress on disability rights ‘patchy and tortuous’, UN told
- Peer pressure sees minister finally announce date for taxi access laws
- Stop the NHS slashing vulnerable people’s care packages in and around Leicestershire
- Minister tells industries to increase representation of disabled people
- Disabled children in England 'finding it increasingly hard to access council care'
- Wheelchair Rugby Loses Funding Appeal
- Plans that could force people into institutions could be ‘front line’ of national problem
- Young people 'fear stigma' if they ask for mental-health help
- Disability benefits process is 'inherently flawed', MPs told
- Businesses woefully ill-equipped to deal with Britain's rapidly growing mental health crisis
- Cash boost for pupils with special needs and disability
- PIP investigation: ‘Horrific’ suicide question sparks fresh assessment inquiry calls
- Disability report: Being disabled in Britain
- Stop PIP reassessments for patients with progressive diseases, campaigners say
- Patients with learning disabilities missing out on health checks
- Thousands have disability vehicles taken away
- Aspire announces GLL and LCiL as first partners to lead InstructAbility
- Easy read guide to voting by post
- Online campaign ‘could enable disabled people to affect election outcome’
- Health Committee inquiry and report: Brexit and Health and Social Care – People and Process
- Women’s Resource Centre report: the Impact of Austerity Measures on Women’s Voluntary and Community Organisations
- Disabled people ‘forced into dangerous workfare that breaches health and safety laws’
- Mental Health Foundation report: Surviving or Thriving? The State of the UK’s Mental Health
- Stirling University to launch home dementia app
- General Election 2017: What are the parties promising disabled people?
- Anger, resignation… and optimism in wake of general election result
- New disabled MPs pledge to fight for rights in parliament
- Queen’s speech: May ‘abandons’ election pledge on access
- The waiting time for a vital disability benefit has risen hugely in 6 months
- Almost 6,000 mental health patients sent out of area for care last year
- Patients increasingly forced to crowdfund their own wheelchairs as NHS provision not enough, doctors warn
- Years of austerity have left personal assistance in ‘very fragile state’
- Over Half Of Foodbank Users Are Households With A Disabled Person
- Prince Harry launches brain injury card in Suffolk
- Iain Duncan Smith says work capability assessments don't work and are 'too harsh'
- PIP investigation: 200 cases of dishonesty… and still DWP, Atos and Capita refuse to act
- Global blindness set to 'triple by 2050'
- My disability abortion bill could halt Britain’s slide towards eugenics, says Tory peer
- Jobcentre Staff Have An Alarming Lack Of Confidence Dealing With Disabled Claimants
- BBC initiative for disabled actors is a ‘wake-up call’ for producers
- Bus industry set to face fresh legal action over access to wheelchair space
- Government accused of breaching UN convention in its treatment of disabled people
- Theresa May admits UK mental health services are 'patchy'
- 2,000 children with learning disabilities left without a school
- UK faces UN examination: Government cuts caused ‘human catastrophe’
- Half of parents of disabled children forced to reduce working hours due to 'unlawful' cuts to school transport
- Summit meeting will aim to bring movement together on independent living
- Have you got the wrong impression about schizophrenia?
- Quarter of 14-year-old girls 'have signs of depression'
- Council’s review finds PIP ‘not fit for purpose’
- Epilepsy medication impact not shared
- What is universal credit - and what's the problem?
- Calls for Amazon to ban 'anorexia hoodie'
- Green man crossings 'too fast' for people with arthritis
- Mental health patients being failed as services face 'potent mix' of workforce cuts and rising demand, shows report
- Universal Credit helpline charges scrapped
- Hate crimes against disabled children rise 150 per cent in two years
- Modelling debut for boy, 11, with Down's syndrome
- Wheelchair access at Premier League grounds improved after campaigning
- Mental health sees 300,000 people leave their jobs each year
- Care Quality Commission report: Annual State of Health Care and Adult Social Care in England 2016/17
- Access to Work: ‘Scheme’s future in jeopardy through cuts and incompetence’
- Tailored treatment study aims to improve prostate cancer care
- Government admits disabled people have been receiving too little financial support from DWP
- Disabled people worry about telling employers of their condition
- Disabled woman takes DWP minister to court over PIP mental health changes
- Women and disabled people hit hardest by years of austerity, report confirms
- New year’s honours recognise campaigners, inventor and Paralympians
- Esther McVey makes disability benefits U-turn over payments
- Educational support for deaf children in England 'in complete disarray'
- Blue badge scheme could be extended to cover autism and dementia
- More than 220,000 people scored zero on disability benefits test
- MPs launch inquiry into online abuse of disabled people, following Katie Price petition
- Open letter from mental health activists probes charity’s links to DWP
- UK sick pay is found to breach international legal obligations
- Psychosis patients 'not getting best care'
- DWP promises no-one will lose out in huge review of 1.6 million PIP cases
- Majority of disability benefit claimants being left with not enough to live on, campaigners warn
- Suffragettes needed? The women still struggling to vote
- New 'miracle jab' promises to ease arthritis pain - and save the NHS billions too
- Antipsychotic drug found to relieve symptoms suffered by millions of people with Alzheimer's disease
- Government’s suicide prevention boss refuses to call for action on ESA risk stats
- Disabled peer raises ‘deep concerns’ over impact of Brexit bill on rights
- PIP assessments: 'Lack of trust' in benefits systems
- Anti-depressants: Major study finds they work
- More than a million benefits sanctions imposed on disabled people since 2010
- Thefts of disabled blue badge parking permits quadruple in England
- High Court rules Tories' disability benefit changes ‘blatantly discriminate’ against mental health patients
- Echolocation could help blind people learn to navigate like bats
- Call for government to ditch ‘discriminatory’ PIP rules for NHS care home stays
- Mystery over shock fall in disability benefits paid to older people
- Disabled passengers' champion unveiled
- Wheelchair users in UK to be given enhanced rights for bus travel
- Spring statement ‘shows disabled people will continue to bear brunt of austerity’
- House of Commons could replace benches with fold-down seats to improve access for disabled MPs
- NHS must prepare for `huge´ demand for new Alzheimer´s drugs, experts warn
- Access to work: Funding increase for disabled workers
- Doctors hope for blindness cure after restoring patients' sight
- New initiative to address ticketing barriers for deaf and disabled fans
- NICE: 'Care providers must ask people with LD what they want out of life'
- Disabled people struggle to afford food and heating, study says
- Government faces legal action over election access fund
- Disability-led ensemble to play BBC Proms
- Women across UK denied mental healthcare around childbirth, say doctors
- Robot helps Jack McLinden, 14, to be Everton mascot
- Cystic fibrosis: Company urged to lower cost of life-changing drug
- Disabled people split over personal health budget expansion plans
- Benefits applications forms to be made more accessible
- Government response to damning inquiry into disability benefit system 'falls short', say MPs
- EHRC appoints eight disabled people to advisory committee
- Sharp rise under-11s referred for mental health help
- Feel the beat: deaf fans fight for access to live music
- Health and Social Care Committee report: The Government’s Green Paper on mental health: failing a generation
- Disabled people face ‘hidden crisis’ in accessible housing
- Equality watchdog ‘considering legal action against government’ over rail access failures
- TUC Disabled Workers’ Conference: ‘Critically-flawed universal credit must be scrapped’
- Call for national research as fears grow over loss of DPOs
- DWP is failing ‘vulnerable’ claimants of universal credit, says watchdog
- US approves UK-grown marijuana-based epilepsy drug
- A Better Understanding of Chronic Pain in CP Patients Is Needed, Review Study Suggests
- Student mental health support must improve, universities told
- Minister lauds £600,000 for rail access… after her department confirms £47 million in cuts
- Scientists have discovered a new type of depression: Finding will pave the way for new treatments for 30% of patients who do not respond to drugs
- Penny Mordaunt becomes first ever government minister to use British Sign Language in Parliament
- Could psychedelics transform mental health?
- Disability Confident employers promise less than one job each on average
- Patients face autism referral and assessment 'lottery'
- Government will pay arrears to thousands of benefit claimants
- Antidepressant prescriptions for children on the rise
- Watchdog’s ‘issues of concern’ over regulator’s treatment of PIP complaints
- Blue badge scheme to provide ‘lifeline’ for mentally ill people
- Seven-year-old double amputee is cast by River Island to model its new active wear range - as the little girl's proud father says there's 'no stopping her'
- Thousands of mothers left to cope alone with mental illness
- International disability community sign up to progress
- Disabled children waiting too long for NHS wheelchairs
- DWP repeatedly breaches FoI laws ‘in bid to hide secret jobcentre reports’
- Quarter of 14-year-old girls in UK have self-harmed, report finds
- Scientists 3D-print a 'bionic eye' that could soon let blind people see again
- Autism dogs: Call for regulation as demand quadruples
- Minister snubs DPOs – and ‘breaches UN convention’ – by refusing meeting
- 'Black hole' in youth mental health support
- Anger over government’s ‘pathetic’ election access report
- Extreme Dwarfanators Wrestling organisers threaten to SUE Leicester arena for cancelling event
- 'The right trousers': Wallace and Gromit inspire artificial muscle clothing
- Are we really on the brink of a cure for Alzheimer’s?
- Parents in England seek legal action over special needs funding cuts
- Waiting times for disability benefit claims soar by three weeks in three months
- Many disabled people hide their impairments to avoid awkwardness, report says
- England amputees thank Premier League for World Cup funding after FA snub
- Police work on disability hate crime is ‘unacceptable’, say watchdogs
- Pregabalin and gabapentin to be controlled as class C drugs
- Government could pay out more than £1bn due to benefits 'shambles'
- Young people with special needs 'being failed in 44% of areas in England'
- Government ‘blocked’ involvement of user-led groups in mental health summit
- Two in five people with learning disabilities not diagnosed in childhood
- Call the Midwife actress Sarah Gordy becomes the first woman with Down's syndrome to receive an MBE
- Regulator sets out ideas for better assisted rail travel
- DWP ‘plans to move more benefits onto troubled universal credit IT platform’
- Retailers Need To Be Doing 'Purple Tuesday' Every Day Of The Year, Not Just A One-Off
- Watchdog calls on government to act ‘before it’s too late’ on impact of cuts
- Builders criticised for lobbying against accessible homes
- Put universal credit on hold to protect disabled claimants, say MPs
- New cervical cancer test could 'revolutionise' screening
- Exoskeleton suits: can 'superhuman' frames cross into the mainstream?
- Mental health: target to boost staff numbers by 21,000 set to be missed
- Being bullied permanently SHRINKS part of the brain 'which raises the risk of developing anxiety later in life'
- AUTISM COULD BE DIAGNOSED AT BIRTH WITH A HEARING TEST
- Changes to disability benefits cost £4bn in extra welfare payments
- Brits with mental health problems TWICE as likely to lose up to £140 a week in benefits
- Benefit appeal recordings not possible at nearly half tribunal venues
- Teenage boy with rare brain cancer among first in UK to receive proton beam therapy
- Amputee Marine Lee Spencer in Atlantic row record bid
- Mental health: UK could ban social media over suicide images, minister warns
- BFI’s free film collection shows 100 years of disabled people on film
- Genetically modified chickens lay eggs with cancer-killing chemicals inside lay eggs with cancer-killing chemicals inside
- ‘This is another crack in the glass ceiling’: RSC casts disabled actors in new season
- Carers quitting jobs from pressure
- Disability-themed emojis approved for use