EDITORIAL – The Language of Cancer (And Other Chronic Conditions)
Following the death of 43-year-old actor Chadwick Boseman with the announcement that he had Colon cancer, the discussions resurfaced on the ‘war like’ language that is often used when discussing not only Cancer but other Chronic medical conditions. The people with the conditions are described as ‘warriors and heroes’ who are ‘fighting a battle’.
Last year, a Macmillan survey showed that many patients dislike the fighting clichés used to describe cancer – with 44 per cent of respondents disempowered by the phrase “lost their battle”.
These warlike descriptions increase the pressure on patients to act or feel a certain way, with many feeling they’re letting people down if they can’t stay permanently positive, or even worrying they don’t have what it takes to return to health.
The assumptions about a person’s experience, statements such as ‘you’re so brave’ can upset and anger people. Getting cancer isn’t a choice that is actively made.
YOU DON’T LOOK SICK: ‘I’ve Had Cancer For 12 Years But People Tell Me I’m Lucky’ – Edited from Metro.co.uk Archive Feb 2019
There are 13.9 million disabled people in the UK – and many of them have an invisible illness. Metro.co.uk publish weekly stories about living with an invisible illness or hidden disability.
Katie Ruane, 34, from London, has been living with the blood cancer, chronic myeloid leukaemia (CML) since 2007. CML affects the production of white blood cells as the bone marrow produces too many myeloid cells – immature cells that don’t work properly. It is a cancer that progresses slowly and it is treated differently to other blood cancers.
Patients with CML do not require intensive intravenous chemotherapy and in Katie’s case, it is managed by taking one chemotherapy tablet each day. However, CML still causes fatigue, pain and weakens the immune system. Katie says there is a lack of understanding about her condition, particularly because she looks well, is able to work, never lost her hair and other when she was first diagnosed, has not been admitted to hospital.
Katie was diagnosed at the age of 22, while she was studying for a degree in History of Art at the University of Edinburgh. She had been experiencing symptoms for around six months but didn’t think it was anything serious. She explains: ‘I had dropped from a size 14-16 to an 8-10 without having to do anything. ‘I also craved certain foods that I have since found out have really good nutrients in them. It’s really quite amazing that I was eating foods to try and help my body without knowing anything was wrong. ‘I also lacked concentration but again I didn’t really think about it. It really kicked in over the Christmas holiday and I just thought it was because I was tired after a busy university term and essays and exams.
Katie was so tired, she struggled to even make an appointment and it was thanks to her flatmate who made her get up and go to an open surgery clinic, that she was eventually diagnosed. She says: ‘I told the doctor that I didn’t feel right, but I didn’t feel ill either and listed my symptoms. ‘The doctor said – and I don’t know to this day if they meant it, or said it so not to worry me – that they didn’t know what was wrong but they did a blood test and told me to come back in a week for the results.
‘I now know that my symptoms were a list of red flags, but at the time I had no idea. I didn’t go to the doctor worried or on edge, and never expected the series of events that happened next.’
That evening, the hospital called and then told her that rather than waiting a week to go back to the doctor, she needed to go to hospital straight away. After a series of phone calls from the hospital, and phone calls home to say that something was wrong, I was eventually given enough information to guess that they thought I had cancer.
Back then, cancer, especially blood cancers, weren’t in the press as much, so I was completely naïve to the potential severity of it all. Ignorance is bliss. ‘I had my own room in the hospital with an on suite, fridge, TV and DVD player so I was pretty happy. I didn’t realise it was because they were so worried about me and I was on a high dependency ward. When I met my consultant, I was told that I was lucky and that the cancer I have wouldn’t kill me. ‘I would just have to take these really clever pills for the rest of my life, but it would be better than it had ever been and I wouldn’t know that anything was wrong with me.
Katie works as a naturopath across London, which means commuting every day. In such a busy city, it can be difficult for people to notice when you might need a seat or some space if you have an invisible illness. Katie appeared in an ad for TFL about the badges for people with invisible conditions Katie says: ‘A few years ago, through twitter, I found out about the Cancer On Board badge account, which is now a charity and I am a trustee. ‘This badge changed my life and meant that I always got a seat and people were kind and people let me skip the queues in café’s etc. ‘Then when TFL brought out the ‘Please offer me a seat badge’, the two together were like a powerhouse of badges.
Katie is managing her condition and says she is thankful for all the support she has around her. ‘When things were really bad and I spent most of my time on the sofa, Twitter was amazing. I have made some very good friends through that and having that space was very supporting at the time. ‘I’m also an ambassador for the charity Bloodwise. We have a closed Facebook group and that gang is absolutely phenomenal. ‘They listen to me when I am low and miserable and complaining yet again, and never compare it to them and what they are going through or make me feel completely selfish for complaining again. ‘ https://metro.co.uk/2019/02/24/dont-look-sick-ive-cancer-12-years-people-tell-im-lucky-8622001/?ico=more_text_links
DISABILITY RIGHTS UK (DRUK) – NEWS IN BRIEF
We are the leading charity of its kind in the UK. We are run by and for people with lived experience of disability or health conditions.
Our key decisions are made through our members who elect the Board of Trustees: and by our Senior Management Team.
We work with our members to influence national policy on independent living, benefits, education, employment, transport, human rights and other issues – shaping policy through direct experience and expertise.
We also work with our local individual and organisation members to empower and to influence local policy and services.
To contact Disability Rights UK (DR UK) see www.disabilityrightsuk.org/contact-us
Kickstart Scheme Discriminates Against Disabled Young People
The Kickstart scheme pays employers to take on young people for 25 hours a week at minimum wage for six months. However, Kickstart does not pay any specific attention to disabled young people who are often furthest from the jobs market.
DR UK CEO Kamran Mallick said: “It is deeply disappointing to see disabled young people being excluded from Kickstart. Those who desperately want their first opportunity to work but who aren’t on Universal Credit. Disabled young people have higher unemployment rates and should be one of the groups government is supporting to get on the jobs ladder.” https://www.disabilityrightsuk.org/sites/all/modules/civicrm/extern/url.php?u=58411&qid=8725304
£120 Million Pounds Spent Defending Challenges To ESA & PIP
A Freedom of Information Act response requested by the Independent newspaper reveals that the DWP spent £61 million on staff costs for the appeal process for the two benefits in 2018/2019, up from £44 million two years before.
DR UK Welfare Rights and Policy Adviser Ken Butler said: “A decade of austerity driven welfare reform has led to the obscene situation where the DWP is seemingly spending more money defending wrongful disability benefit claim decisions than it is on disabled people’s benefits.
“We need widespread reform of the benefits system so that it is no longer based on conditionality and sanctions but on dignity, inclusion and the social isability and that ensures a quality of life that is more than the bare minimum.” https://www.disabilityrightsuk.org/sites/all/modules/civicrm/extern/url.php?u=58412&qid=8725304
98% Of British Courthouses Inaccessible
Just 2% of British courthouses are fully accessible according to a new report by law firm Bolt Burdon Kemp. The firm assessed 444 courthouses in England, Wales, and Scotland. DR UK CEO Kamran Mallick said: “It is an absurd situation that twenty five years after the Disability Discrimination Act, requiring reasonable adjustments to be made to accommodate disabled people, the places where the law is most commonly upheld still do not comply with legislation. “There cannot be a pick and mix approach to accessibility where adaptations are made for people with some impairments, but not for others. Accessibility, like the law itself, must be upheld as a universal principle.”
Only A Third Of Deaf Children Would Be In School If Masks Mandatory
Just one in three deaf children across the UK are likely to be in school if facemasks are introduced, a new survey by the National Deaf Children’s Society shows.
Of 800 parents of deaf children, just 36% were likely to send their child to school if teachers were asked to wear face masks. A further one in five (19%) were uncertain about what they would do.
DR UK Head of Policy Fazilet Hadi said: “We fully back calls for an inclusive approach to education. We join the calls for clear face masks for those working with deaf children and greater investment in support technologies to ensure a parity of experience within the school environment.”
Sense Report Shows Devastating Impact Of Reductions In Social Care
A new report from deafblind support charity Sense shows that as a result of the Coronavirus Act, families had support removed and had nowhere to turn for help. There are 1.7 million disabled adults living with their families. The research showed that 75% of those surveyed had their care and support reduced without any consultation or information, with over 50% of disabled adults and carers experienced reductions in wellbeing.
DR UK’s Head of Policy Fazilet Hadi said: “This evidence comes as no surprise to disabled people. The government must listen and act to overturn the devastating ongoing impacts of reductions in care and support. Whilst it is understood that some day facilities had to close, alternative support arrangements, agreed with families, should have been put in place.”
Last year, the Department for Transport (DfT) completed an exercise to gather evidence on the problems that pavement parking causes, the effectiveness of current legislation, and the case for reform.To further develop its understanding of the pavement parking problem, the DfT is seeking your views on:
The DfT recognises that there are pros and cons for each of the options, and your responses on each will inform how this issue should be addressed. How to respond
The consultation period began on 31 August 2020 and will run until 22 November 2020 so ensure that your response reaches us before the closing date. If you would like alternative formats (Braille, audio CD, and so on), contact firstname.lastname@example.org.
You may respond via:
Due to remote working for the foreseeable future, we cannot accept hard copies of responses but please let us know if you are unable to respond by using the survey or by email.
When responding, state whether you are responding as an individual or representing the views of an organisation. If responding on behalf of a larger organisation, make it clear who the organisation represents and, where applicable, how the views of members were assembled. https://www.gov.uk/government/consultations/managing-pavement-parking/pavement-parking-options-for-change
HIGHLIGHTING THE E-SCOOTER CHALLENGE TO SAFETY ON OUR STREETS – Edited from RNIB.org.uk
Micromobility vehicles are small mobility vehicles, which are powered partly, or fully, by a motor. For example, e-bikes (electronic bicycles) have already been approved for use, including for dockless bike hire schemes in many areas around the UK. But there are several types of micromobility vehicles which are not currently allowed on public spaces in the UK. These include e-scooters, electric skateboards and self-balancing vehicles.
In our recent travel survey, 81 per cent of respondents to told us it is important, or very important, to be able to walk independently, without a sighted guide. The prospect of an increase in quiet vehicles on our streets is making many worry about the impact on their safety.
For example, we were told:
E-scooters are extremely difficult for blind or partially sighted people to see and hear. It may not always be obvious to someone riding an e-scooter they are approaching a pedestrian with sight loss. These vehicles will travel at higher speeds more often than pedestrians or pedal bicycles. They can be heavy, so we have serious concerns about the risk of collisions with blind or partially sighted pedestrians. Where dockless bike schemes exist currently, we have already seen a big increase in bicycles parked on pavements, causing dangerous trip hazards for blind and partially sighted pedestrians.
We remain concerned that even with steps taken to reduce the risk of collisions, e-scooters on our streets pose a threat to the confidence and independence of many blind and partially sighted people when walking.
Our recommendations include:
Any changes to our streets must be accessible for everyone. Councils are rapidly making changes to our streets to encourage more walking and cycling, so that fewer people rely on public transport. Along with our concerns over e-scooters, we’re worried that the speed of change will make it more difficult for blind and partially sighted people to get out and about.
Please write to your local councillor, asking them to make sure any local changes are accessible for everyone.
SURREY LIBRARIES: GETTING BACK TO NORMAL
We have our doors open to everyone, come inside, browse and borrow at 39 libraries. Public PCs are up and running again, and over the course of this month, we will continue to fully re-open our libraries, with our aim to have all 52 open by October.
We are really keen to welcome you but please check our website for up to date opening times as most of our libraries are operating on temporary opening hours.
Throughout lockdown, our book-buying team have been busy buying new books for our shelves, (over 54,000!) and you will notice all these lovely new books next time you visit. Our online library catalogue features over a million items, and throughout September, you can request any item without paying the normal fee. DVD requests are free too, and we have reduced the hire charge, and increased the loan period to 2 weeks, so a good time to look at our very extensive range. We extended the return dates on all borrowed items during lockdown, so nothing is due back before at least the 4th September 2020, but after that books will gradually reach their return dates, so please check your loans online, renew anything you still have to finish, and return the rest. https://arena.surreylibraries.org/web/arena/protected/view-or-renew-my-loans
You can also return any book to any branch 24/7 using the book drop or return during our opening hours and exchange for something new. We have a great app you can use to manage your loans, renew and request books, find your nearest library. It's worth checking out if you haven't used it before, and very easy to use. If you prefer to phone, you can use the automated renewal system 24/7 - just call 0300 200 1001 and have your membership number and PIN to hand.
Getting back to normal, also means that we will gradually be returning to our usual lending patterns. Next week most of our stock will be available for six-week loans - double the usual loan period, and from 28th September we will be back to normal three-week loans for most of our books. We have worked hard to make our libraries safe. To find out more about our measures, please visit: https://www.surreycc.gov.uk/libraries/news-and-events/news/coronavirus#opening
DMUK’S BAYWATCH CAMPAIGN - CHANGED FORMAT FOR 2020 SURVEY.
Disabled Motoring UK (DMUK) decided that it was not appropriate to ask shoppers to physically count cars not displaying a Blue Badge which are parked in disabled bays. Instead they ran their survey in August by asking Blue Badge Holders to think back over the last 12 months to consider their general parking experience.
SCAN would like to look at the local issues of Blue Badge Abuse in a similar way.
We are asking Blue Badge Holders to let us know their general parking experience and to answer some more general questions about their experiences at supermarkets and on their everyday journeys.
Please contact us if you want to participate in this survey. Email email@example.com or text 07853 038933 to register your involvement and a form will be posted to you or visit our website forum where the questions are listed. https://www.spelthorneaccess.org.uk/forum/scan-blue-badge-parking-bay-abuse-survey