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Having cancer as a disabled person

Richard_ScopeRichard_Scope Posts: 1,224Member, Administrator Scope community team
edited March 11 in Guest blogs

Our @Richard_Scope talks to us today about the barriers to accessing healthcare as a wheelchair user during his cancer treatments.

Growing up I wanted the same as most people; a job, my own place to live and hopefully a family. I worked hard to achieve all those things, and everything was going to plan, or so I thought. Then January 2010 hit. I found a lump. At first, I did the stereotypically male thing and ignored it. But it eventually got to a point where I couldn’t explain it away or ignore it anymore. After 5 weeks of denial and stress, I was diagnosed with cancer by my G.P.   

I had to have an ultrasound in my wheelchair because the examination bed didn’t lower sufficiently for me to transfer safely. Some weeks after that the lump was removed but I was told that there was a high chance that the cancer had spread. Now, living with Cerebral Palsy has meant that I’m no stranger to hospitals, consultants and surgeries but this was very different. For the first time ever, as daft as it sounds, I realised that I wasn't immortal. What was also very different was the way I was treated by this new department, in comparison to the Orthopaedic departments that I had been used to growing up.   

hands and notes and flowers on a table

Those differences presented themselves very quickly indeed! Before I could begin my chemotherapy regime, I had to undergo a battery of tests to establish my lung function, hearing levels and crucially my weight and height to determine the dose of radiation that I should receive. The hospital had no way to weigh me as they did not have a set of scales that I could sit on safely, and due to the muscle tightness in my knees, my exact height was also very difficult to establish. These important measurements were just guessed. To say my confidence was low was an understatement but I began my chemo as an in-patient on the ward.  

During this time, it was clear to me that the hospital was very underprepared to treat a cancer patient who also had a physical disability. As part of my treatment, I had to constantly drink water to help protect my kidneys from the radiation. Obviously, this meant I needed to use the bathroom a lot. On many occasions, I could not get the assistance I required to do this. I couldn’t walk let alone walk with a drip to the nearest toilet, so a lot of the time my pride took a hit. The knock-on effect of this was more work for the already overworked staff, having to clean me up and reconnect me to my beeping best friend (my chemo delivery machine). Despite these additional challenges I got through 8 months of treatment with the help of my wife and very close friends. There were only two real casualties: my ego and my long hair. 

I will always be forever grateful to those staff that ensured my recovery and I really do understand how overworked the staff are, but I can’t help but think that a dire situation could have been made slightly better by the hospital considering my cerebral palsy and having the necessary equipment to help me do the basics. 

Has your disability affected the treatment you have received? Or put you off seeking treatment? 

 

 

  

 

Scope
Specialist Information Officer - Cerebral Palsy

Replies

  • Ami2301Ami2301 Posts: 3,823Member, Community champion Brian Blessed
    God... @Richard_Scope I admire you for being open about this, how are you doing now?
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Richard_ScopeRichard_Scope Posts: 1,224Member, Administrator Scope community team
    Thanks, @Ami2301 ;
    I am in remission and hopefully in January of next year will be completely discharged from the oncology department :)

    Scope
    Specialist Information Officer - Cerebral Palsy
  • Ami2301Ami2301 Posts: 3,823Member, Community champion Brian Blessed
    That's brilliant! You're a fighter and I can't imagine you with long hair!
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • CockneyRebelCockneyRebel Posts: 4,570Member, Community champion Brian Blessed
    Hi Richard

    Thanks for sharing your story. You are and will be an inspiration to many.
    Be all you can be, make  every day count. Namaste
  • Antonia_ScopeAntonia_Scope Posts: 937Member, Administrator Scope community team
    What an insightful and inspiring post, thank you for sharing this with us @Richard_Scope ; :)
  • MarkmywordsMarkmywords Posts: 389Member Chatterbox
    edited March 11
    It was the other way round for me; cancer treatment caused my disablement. I'm left being heavily dependent on the specialist hospital now.
    As a disabled patient, you;
    - Get fleeced for parking charges just like everyone else although you need far more time.
    - Cannot even get from the car to the entrance unless a miracle fees a space up. I've had to turn back several times. Last time I left really early to get a close disabled space and waited 40 minutes in a nearby Tesco's free car park before the final leg. :(
    - Find waiting on the cheap seating incredibly painful. I've had to walk away more than once.
    - Wait for 40 minutes for a porter to x-ray/CT/MRI each way !
    - Find that the scanner has no accessibility so they have to find people to lift you on and off.
    - Have trouble with a large prescription and waiting an hour for them.

    So being disabled has led to me being unable to access treatment due to the hospital's lack of interest in the disabled.
    Just last week I had a new referral for a long-term condition. I was given four options for the hospital and one of them was a private one. It was, as they say, a no-brainer.
  • veritercveriterc Posts: 128Member, Community champion Chatterbox
    If I tell you I was interested in your story - you might think I am a bit weird!  But I edit a website for speifically for cancer survivors, many of whom face similar problems. So what you have to write about is probably of great interest to many of the readers of aftercancers.com.  
    You probably come up against the clunky NHS Admin - had a posting about the latest idiotic letter sent out to NHS Foundation Trust CEOs - aftercancers.com/humour-dido
    Would you be interested in a short article about what would make life easier for disabled cancer patients e.g. accessible parking, etc? Any time you would like to send this I would be really interested. 
  • NoraRNoraR Posts: 12Member Talkative
    Thank you for sharing your experience @Richard_Scope and I hope you're recovering ok. I was really inspired by the Scope for Change young campaigners - one of whom campaigned for their local hospital to set up a disability advisory group to feed into the leadership decisions at the hospital -I think all hospitals should have these opportunities. The trouble is often patients don't have the strength to advocate for themselves or aren't in the right space to add to the list of things they need to do to combat their disease or condition. The onus can't always be on patients to argue for changes, it's exhausting. I think it's so important experiences are shared thought so thank you for writing this. 
  • thespicemanthespiceman Posts: 3,724Member, Community champion Brian Blessed

    Hello @Richard_Scope ; Thank you for sharing with the community .

    Understand how important first all we as a community need to support each other.

    Also second to be aware as a community of our own health needs and to recognise if there are problems or issues check with the Doctor.

    Especially the gentlemen of the forum, we all should be aware.

    Any problems or issues always find out . Might be nothing but it is always safe to check.

    All I add is wish you well for a speedy recovery .

    Take care.

    @thespiceman


  • Richard_ScopeRichard_Scope Posts: 1,224Member, Administrator Scope community team
    Good advice @thespiceman ;

    Scope
    Specialist Information Officer - Cerebral Palsy
  • veritercveriterc Posts: 128Member, Community champion Chatterbox
    It seems to me that the more we stick together, the more chance we have of being heard.  
  • mossycowmossycow Posts: 454Member, Community champion Chatterbox
    Nice one Richard. It ndoes baffle me how one area of a hospital can be flexible in having us with less average bodies in... Then other departments are clueless.

    I had a difficult time in the 6 day stay in hospital after having our daughter. They kept saying I should be able to do x, 3 days post surgery... And I kept saying I couldn't do x before surgery 😔 

    I'm so glad you are I remission  and on track for discharge.

    Do you think they learnt anything from ypu or is nothing progressing? 

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • Richard_ScopeRichard_Scope Posts: 1,224Member, Administrator Scope community team
    Thanks @mossycow ;
    There is just no communication between departments. Not that I have experienced anyway. I'm sorry to read that you too had a difficult time in the hospital after the birth of your daughter. I have heard many similar stories from disabled women who have had children.

    I would like to think that the department has taken note of the issues I faced as a disabled patient but I haven't seen any real evidence of lessons being learned. Sadly.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • veritercveriterc Posts: 128Member, Community champion Chatterbox
    My favourite comment from an NHS Nurse to me, as a long ex-polio disabled person:  "come back when you have got your mobility back".
  • MarkmywordsMarkmywords Posts: 389Member Chatterbox
    The irony is that nowhere could have more disabled people on its site than a hospital.
    Indeed, as I said, the hospital treatment caused my disabilities.
    The only way they will ever change is by suing them under the Equalities Act. Money talks!
  • veritercveriterc Posts: 128Member, Community champion Chatterbox
    Simple thing -  local A  & E decided to scrap pillows on trolleys to save money.  I need support for my spine.  They told me they couldn't provide pillows.  I said I was sure InjuryLawyers4U would take on my case when I sued hospital for consequences of lieing for an hour or two without support.  Someone ran to get pillows for me and they were re-instated!
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