|(Title Image: Lady stick figure desperate for the loo, + sign, wheelchair symbol = Changing Places toilets) |
This post is part of a series focusing on Changing Places, in collaboration with Muscular Dystrophy UK's #FitToBurst Campaign. It might be helpful to read PART ONE FIRST!👍
Where we left off in Part 1, I had been referred to a Urologist to discuss the ins and outs of what it will take for me to undergo unnecessary surgery for a Suprapubic Catheter (aka SPC). Fast forward 4 months to November, I was seen at Royal Bolton Hospital.
Before I go into what was said and where I go from here etc, I think I need to explain the stupidity that is whoever makes NHS patient referral protocols. Any patient is referred to their nearest, local hospital when its NEW referral to a specialist doctor. That's fair enough. Only (now this is where it gets REALLY dumb and starts to waste time and MONEY..) as someone with complex medical needs due to my rare Neuromuscular Disease, my Neuromuscular Specialist had to refer me to Royal Bolton, knowing I would need the surgery done under the speciality of Wythenshawe Hospital (where all my NMD medical team are based), just to follow protocol. Royal Bolton have to declare, as my local hospital that they cannot handle me in order to get me referred back to the hospital I came from, but just a different specialist area - in this case Urology.
|(Quote Image: "I'm not a doctor. I just have a tremendous amount of common sense.")|
My NMD specialist told me straight, it is crazy! He knew I'd end up back at Wythenshawe but we have to do a merry dance to get me under a Urologist at the hospital I go to anyway? Doesn't make sense does it? It makes you realise just how many ways the NHS is wasting everyones times and money that they don't have in the first place...
Anyway, I thought,"OK no big deal... I'm going to see a Urologist at Bolton, they'll freak out and not want to touch me with a barge pole and I'll get thrown back to the expert hands at Wythenshawe".... Nope!
It was 14th November '17 when I went for my first appointment with this bog, standard Urologist at Royal Bolton. I had really worked myself up to fight my corner. I was going to go in there, explain the toileting situation, the antibiotic resistant continues infections, risk to my health and push the fact that I know MANY, MANY other women with Muscular Dystrophy who end up having a SPC fitted due to mobility toileting issues. What I hadn't prepared for was the fact Dr Lee didn't know anything about me bar my name.
|(Image: A RADAR key, beneath it reads - The answer is a RADAR key. With your own RADAR key you can unlock most disabled toilets in the UK)|
After I'd explained I lack the ability to self-transfer and only Changing Places facilities had what I needed to toilet, she looked at me blankly and said "Can't you just get one of those special keys to access disabled toilets?" It was clear the extent of my mobility limitations had totally gone over her head. I took a deep breath and explained with more details that Yes, I do have a radar key to access toilets supposedly catered to people with disabilities but they do not meet my needs. I can get in and stare at the toilet, but I cannot get onto it to use it. She nodded, flicked through my file and looked at me again, "So you can't get onto the toilet?"
"No, not without a hoist and adult size changing table."Then proceeded to educate her on the Changing Places Campaign, how there's currently as of Nov 2017 1440 Changing Places toilets that meet the needs of every disability, no matter how severe but given this number is across the entire UK, the nearest one to me is 2 hours away. She just totally blanked me.
"And I suppose you've explored and exhausted all other toileting methods?"
"Yes I have, I've been non-ambulantory since age 6 and lost my ability to use standard disabled loos age 14 after spinal surgery. I have been fighting against catheterisation and done harm to my health by holding it the majority of the day everyday, just to live a normal life." I was starting to get weary at this point.
"How about female urinals?" Dr Lee was very serious that this was the obvious solution!
I took a deep breath and asked God for patience, "I cannot get my clothes off in my powerchair, I need to lie down and then be transfered via a hoist. I cannot safely tetter on the edge of my seat to use a female urinal without one person holding me and another holding the urinal. That's the only way that'd work and to me that's very undignified and I wouldn't be able to relax to urinate with such invasion of privacy."
I felt defeated already, she totally didn't get it. What didn't help was there was a male student in the room listening to intimate details of the true extent of my personal difficulties with toileting in great detail. Normally I'm fine with students and believe they all need to start somewhere. But I wasn't even asked if it was OK he was present and the way Dr Lee was talking to me was beginning to get degrading and humiliating. This in my mind would say to this student, this is how you treat patients with complex medical needs.
Dr Lee gave the final blow near the end of the appointment by telling me she was NOT in favour of the idea of getting a Suprapubic Catheter. She wanted me to have a regular urethral catheter with a bag for 2 months, if I tolerate it and can go freely to the toilet to prove a reduction in my infections, then and only then will she consider me for surgery. I was mortified. I didn't want this. I didn't want a normal catheter that'd aggravate my UTIs, interfer with my sex life and worry about changing bags all the time. I want and needed the least invasive long term solution. I had planned to use the SPC with the flip-flo valve so it'd be bagless. I'd simply hold the tube over any toilet and unlock the valve to urinate without the need to transfer. The valve insures I keep my bladder muscles working by holding the urine still and giving me the sensation. Having a bag constantly would risk me being permanently unable to feel when I need to go and ultimately meaning a bag forever as my bladder muscles would stop working due to lack of use. Dr Lee didn't understand a think about Neuromuscular Diseases, nor got why keeping my bladder active and being bagless was important to me. I am not incontinent after all.
|(Quote Image: "Sometimes it's better to keep silent than to tell others how you feel. Because it hurts badly when you come to know that they can hear you, but can not understand.")|
I was on the verge of tears whilst I was given a slip for the district nurse to come put in a catheter at home. I'd have it in for 2 months until my next appointment with Dr Lee. My quality of life was in her hands, I'd lost control of my wants and needs, along with my fight. All the while knowing if I didn't comply, she wouldn't authorise the SPC surgery that I know would work for me. She made zero attempt or mention of referring me back to Wythenshawe Hospital. Told me she'd do the surgery under General anesthesia (despite I need to be in a specialist hospital for this under the care of anesthesiologists that know about NMD patients that have fatal risks with going under) and it'd be done at Bolton. I was not comfortable with this, Bolton don't have the facilties or expertise to deal with me with my NMD.
I went home and wrote an email to my Neuromuscular specialist explaining my awful experience with Dr Lee, the ultimatum I was given and how I felt about everything. I joined some Urology support groups on Facebook to get some insight. It was in one of these groups, they suggested I asked for the flip-flo catheter on the temporary urethral catheter as a compromise. At least then I could use the time with this catheter as practice to what life would be like with the SPC as it's the same valve etc. I felt much better knowing now, I COULD go bagless with the urethral. They also told me to ask for the longest catheter or a male version so I'd have enough give/tubing as a wheelchair user to fish it up through my waistband and dangle it over the loo to drain. The support I got from other people with catheters and urology issues was incredible and by talking to them I realised it is still my body, I'm still in control and it's up to me what happens next.
Two weeks after, the district nurses turned up at my home without me even aware when they were coming. Naturally I wasn't in, what with the school run, appointments amongst other things I'm quite an active disabled person. Yet, I was penalised for being active. My PA was at my house doing some cleaning while I was out, so answered to the door to the DNs and they told her that they'd come again the next day between 10am-1pm. That was fine. I stayed in especially after dropping Abbie off. Only to get a phone call at 11ish from a snotty woman telling me that as it's clear I go out and get about, I do not qualify for District Nurses services at home. It's only for housebound patients.
|(Image: District Nurses NHS poster, highlighting how District Nurses go the extra mile for their patients)|
I was gobsmacked and frankly pissed off now. She spoke to me like I was a time waster, like I did not appreciate their services. If I had known they were coming, I'd of been in! I ended up saying;
"Listen, I know you have a lot of people to see but I don't think you even realise I'm in a wheelchair. I'm completely non-ambulantory. I cannot have a catheter placement done at the GP surgery because I cannot self-transfer onto the table, the same reason I asked for a catheter in the first place. You cannot punish me for being an active wheelchair user!"
She bluntly responded, "So what do you normally do then?!"
"I need a hoist and an adult size changing table." I'm getting day-ja-vu here!
After she still insisted I didn't qualify for at home services, despite it being impossible to place the catheter without me getting on a table via a hoist. So I put in an official complaint with the District Nurses in Bolton and SUDDENLY, I qualified.
To add insult to injury after all I've been through with my request. They ended up catheterising me with a catheter that is so incredibly short, I cannot get it above my waistband to use in my wheelchair defeating the whole point. I had told the DN before she placed it to make sure it was long enough for me to use how I need. She also insisted I have a bag. As per Dr Lee's orders. I told her if she won't swap it for a valve, I want the catheter out! I was not willing to cause my bladder muscles to die. She rang through to the office and arranged for another DN to come out with some valves. So she bagged me and told me to stay on, the urine soaked sheet (might I add!). She hadn't put anything under me to catch anything when she catheterised me. And she was asking me to simply lay in it to make it easier for the other DN who'd be out within 2 hours! I was humiliated and my toddler was running about, I needed up in my chair. After she left I asked my PA to help get me up, the bag she put on temporarily was almost full which was concerning as she never showed me or my PAs how to change them if it needed it before the other DN arrived. I ended up unable to get dressed because this bag was so full and this is when we realised the catheter itself was way too short and wouldn't work with the valve over the loo the way I needed to use it. This other DN arrived with the valve and changed it, I told her that the catheter was way too short for a wheelchair user to drain over the loo. She simply told me;
"I can't change catheters, just the valve."
No apology or sympathy or bit of understanding for the situation. I felt like I had to beg her to ask the other lady to come back when she's available to change the catheter to a longer one. She said she would and left. A week later, I still have the short catheter. They haven't found the time to come change it because it's not priority to them. In the meantime I'm toileting like this...
♿ Hoisting onto the bed, pants down, hoisting up and hovering over a bedpan and PA is unlocking and draining my catheter.
♿ Can't go to the toilet when I'm out still
♿ Still holding my wee all day long
♿ Still needing a hoist and change table to toilet which I can only have access to at home or in a Changing Places toilet (which are very few and far between up and friends the country)
♿ Added indignity of a PA doing the valve draining as it's too short and not enough give for me to use myself.
I would say my toileting situation is now more inadequate, undignified and ridiculous now with this short urethral catheter, that's unsuitable, that I felt forced to have to get what I really need.
Despite I'm still in fights with the District Nurses over changing the catheter to a longer more functional one until I see Dr Lee again on 6th Jan, I honestly feel like I'm going to be stuck with this until then.
All this because I can't self-transfer.
All this because Changing Places toilets aren't mandatory in every public building
All this because I and 250,000 disabled individuals need to wee like everyone else
If you've been touched by my story please sign and share the petition on making Changing Places available in all town centres by clicking here -
Changing Places Change.org Petition