Hi, my name is ChristineC1! Agoraphobia and hospital transport issues

ChristineC1

Hiya, I've been agoraphobic for over 20 years and now have cancer again (just needs to be cut out with no further treatment). I read another article about being turned down for hospital transport despite describing in detail the symptons making me incapacitated (I am virtually housebound again). I've left messages for PALS without a return call. The Macmillan nurses are great for info. I've made a complaint to the nhs and am waiting for the reply. No taxi driver will want me in his cab when I am wetting myself and drenched in sweat with fear. I cannot risk being put out of the cab if I throw up everywhere. My sister will accompany me but I am still terrified. I cannot understand why the cancer team or surgeon are not able to override the decision of the transport dept to not give me transport. Symptoms qualify for NEPTS and the nurses told me about the Equality Act 2010 and the rule of 'reasonable adjustment' to accommodate all with disability, otherwise it is discrimination. I am running out of time now for my surgery date. I feel trapped by my situation but must persevere in getting transport of some kind as an extension of the hospital so that the driver has some understanding of my situation. I feel so relieved finding you to share my experience. The hospital (UCLH) is now trying to send me back to my local hospital who have already told me they do not deal with this. I would have to be operated on by a surgeon who does not even deal with cancer. I was told my lump was a cyst over a year ago and got 'lost in the system', not given a biopsy to rule out cancer and discharged back to GP because they didn't answer the telephone number I rang for two weeks. I am beyond appalled at how I am being treated after the surgeon told me I didn't have to worry about anything. It has taken about two weeks for the GP to sort out my sedation for the journey. Whether I am able to get there remains to be seen. If I can't I am left with cancer in my mouth. I am by nature a fighter but there's only so much I can take before I fall apart and want to join my deceased parents. Hope I get some feedback, especially practical advice on getting what I need. And I will share whatever advice I can to help others in my situation. Agoraphobia continues to be an invisible and deeply misunderstood condition. I'm a problem because I don't fit into standard boxes.

OverlyAnxious

Hi,

I don't have any advice unfortunately, but am in a similar position myself.

Made multiple attempts to access local healthcare around 6 years ago, while I could still just about drive myself, but could not manage the appointments. The response from the health services was simply that I had to get to the correct place, at the correct time, and stay for the duration of the appointment. That was never a realistic possibility for me, so I still have all of the same conditions now, and obviously worse than before. I haven't been able to drive at all for the last few years, so no longer have any way to access healthcare at all.

There is a bit more to it than 'just' agoraphobia in my situation, and I purposely avoid using that word as it makes people think it's just a minor mental thing that could be 'pushed through' if I 'tried harder'. So I do agree that agoraphobia, or lacking the ability to travel due to other invisible conditions, is not understood even by the health services.

I am interested to hear what type of sedation you have been offered for the journey? That is something that I might require myself in future.

MW123

@ChristineC1

Firstly, welcome to the community Christine.

There was talk of NHS England being phased out during recent reforms, but it still exists and continues to set national policy, including transport eligibility. Their own guidance states that patients who have a condition or disability that could compromise dignity or cause public concern in a taxi or on public transport, and who lack suitable private transport, do qualify. See link below.

https://www.england.nhs.uk/wp-content/uploads/2022/05/B1244-nepts-eligibility-criteria.pdf

Kimi87

Policy seems to be applied inconsistently.

Mum is a very frail 68, previously had PT for both Outpatients and inpatient travel home, refused recently after a 30 day stay spent mostly bed bound, left to arrange own taxi.

Yet when she bounced back and was readmitted 24 hours later for 5 days, she was given transport home 🤷🏼‍♀️

Rachel_Scope

Hi @ChristineC1 and welcome to the community 😊

I'm so sorry about your situation. I've had a look and it seems there are 2 different types of eligibility criteria. There is the NHS guidance which MW123 has shared above. Here's the link again https://www.england.nhs.uk/wp-content/uploads/2022/05/B1244-nepts-eligibility-criteria.pdf

As MW123 has said, your needs seem to fit the criteria for transport according to this guidance.

I then went to the UCLH transport website and found their criteria:

Our Transport Team can assess whether you meet the Department of Health criteria for eligibility to use this service. Eligible Patients are those;

• Where the medical condition of the patient is such that they require the skills or support of Patient Transport Service staff on/after the journey and/or where it would be detrimental to the patient’s condition or recovery if they were to travel by other means (including private vehicle or taxi).
• Where the patient’s medical condition impacts on their mobility to such an extent that they would be unable to access healthcare and/or it would be detrimental to the patient’s condition or recovery to travel by other means.

This guidance is more vague and may be what they use to assess eligibility.

You have probably already called them but just to be sure this is the UCLH transport services number 0203 456 7010.

As you've arranged sedation, if they refuse to supply transport is there anyone you know that can get you there? You could prepare for the journey, such as taking towels or a fan to ease your sweating.

I've also sent you an email so look out for that please.

ChristineC1

Hi guys,

I'm quite overwhelmed and so grateful for your kind replies, giving me not only support but also the criteria for the NEPTS application. I have contacted transport and the UCLH cancer team again (and sent a copy to add to my complaint already filed) about accommodating my agoraphobia, to recognise that it is a disability with mobility issues. Each section of NEPTS is copy / pasted and answered in detail so that there can be no confusion as to my situation and what I need. I still find it incredible that mental health disabilities are not taken seriously despite the Equality Law. It's stressful enough that I have cancer and have to have surgery. But fighting to get there and back is even more so. I will persevere and keep you updated.

Having you in my corner gives me great courage to keep going, not only for myself but for every other person who needs to fight a system that has boxes to tick and cannot take action outside of that. So much love to @MW123 and @Rachel_Scope for the info I need, @Kimi87 ,sending you love. Keep doing what you're doing for your mum. You're creating precious memories now that you will need in the future. It has devastated me losing my parents. They made my life bearable in so many ways. I am still grief stricken years later and wish I was able to do so much more. I tried so hard. Agoraphobia has taken so much from me. And to @OverlyAnxious I will always be here when you need to chat. Just knowing you have experienced the same battle makes me feel less alone. My sedation is Lorazepam 1mg and has been a two week battle with the GP surgery to get it. I have been given 3 tablets! (and not a box as I expected to get) for the evening before so I can sleep, on the morn before pick up (if that ever comes to fruition), and my return journey. I don't like taking medication but it will be necessary. GP had to check with the pharmacist as to what was appropriate because I will be under anaesthetic for the op. Would rather be knocked out for the whole day so I have no experience of any of it. My focus on getting the transport has been ongoing for about a month now. So I haven't really focused on the journey and day itself. But I have my sister and know she will take no nonsense when it comes to what is needed. Staff at the GP surgery seem to not believe me when I tell them I do not have a person to collect whatever I need from them and that they have to post it to me. My sister has to travel down from Durham to London to come to the surgery with me. I honestly don't know what I would do without her. Agoraphobia reduced me to feeling like a child again. I relied on my parents for everything. It is very frightening being without them. I hope you can get some sort of support network to help you, either through the GP or council. Google is a good search tool for groups in your area. I used to have a support person years ago and it helped with a weekly visit. They can pop in for a cuppa and chat, or take trips out to the park, or go with in hospital visits etc. It really is worth pursuing.

As I move through the day I look forward to evening when I can relax with tv and leave behind whatever I have done to continue the next. It is always a struggle to find solace but being proactive creates focus and helps carry me through. I hope you all find chinks of happiness, wherever it may be.

Lots of love xxx

Rachel_Scope

Hi all,

OMG! I have just been accepted for hospital transport after battling them for weeks to recognise my disability (agoraphobia, panic attack, PTSD) and inability to travel by public transport of any kind. I have involved by therapist, GP, the head nurse and surgeon's secretary, Macmillan nurses, PALS, making a complaint through the complaints dept. I have explained in detail what my disability is and how incapacitated I am by the mental and physical effect on me and having to be sedated in order to travel. I copy / pasted the NEPTS criteria with my own detailed explanation under each section to explain how disabled I am and why I am eligible. I was only told this morning through PALS that to have a blue badge and ability to drive myself rules me out of applying for hospital transport because criteria is so restricted. I cannot drive having a panic attack to the point of being sick and passing out and will be sedated in order to travel. Without the help of Macmillan nurses and your forum I would not have had the info to force a decision to be made. Also, Macmillan would have stepped in to liaise if I was turned again. I cannot tell you how relieved I am. This has been weeks of hard work and stress. Worse than having the cancer. For everyone with a disability needing help I urge to do as I have and if you need my help I am here because I know how hard I have had to fight to get what I need. I am still terrified of being trapped in the car or ambulance even under sedation. I do not have a spare tablet to test the effect on me so cannot gauge what state I will be physically in. The end result would have been no surgery and left with cancer if I did not get hospital transport. I am in shock now. Can't quite believe it's true. I expect this is all down to cost and not on accommodating the disability of the patient. Anyone who cannot fight the system and doesn't have someone to help them needs to contact their GP to get someone who can do it on their behalf. But it seems that NEPTS is what is needed, to describe in detail what the disability is, the effect on you travelling, the reason why public transport is just not an option and why, and that to be denied transport effectively leaves you without treatment because you have no other means possible in reaching the hospital. I am beyond appalled at what I have had to go through for this decision to be made.

Off for cuppa now to calm down. Have rang thanking everyone who I have involved for anything they have done in helping me (even though nobody has helped me because they are powerless to). Looking forward to chatting and getting to know you all. And I do mean it when I say I will help you if I can. Certainly an experience!😥

Christine x

Rachel_Scope

Update above from this new post

ChristineC1

Hi guys,

You will not believe me when I tell you what has happened today. Transport sent a UCLH TAXI but my sister / helper under medical necessity, was refused because she was not booked in on the system. And then we were told that anothyer patient was waiting to be collected in our cab!!! So I was unable to go for my surgery and have spent all day with my sister on the phone and sending emails to get some answers as to exactly what has happened with transport and whether or not I will even get another date for my cancer surgery.

I despair at the cancer team and transport. Nobody will take responsibility. My surgeon is on leave in Oct and Nov so I am left with cancer in my face with no answers because nobody will contact us. My sister has added to my complaint and we have contacted a medical negligence helpline to see if they will assist in getting this sorted out and a new date set.

I am beyond appalled at what has happened to me. I fought for weeks with transport to recognise my medical necessity for hospital transport and for my sister to accompany me. We are waiting for return phone calls tomorrow to move forward but I now have no trust in the team that I will be treated fairly after complaining about my situation.

The Macmillan nurses will step in if all else fails and I have contacted my GP to liaise with the surgeon in getting a new date set.

I thought I had won the battle with transport but now I am battling the whole system and my face cancer remains.

Whatever suggestions you have I will be grateful. I have contacted Complaints, PALS, Macmillan nurses, the UCLH head and neck team, the surgeon secretaries, Transport managers, my GP and therapist.

I have no where else to turn now.

Rachel_Scope

Oh @ChristineC1 I'm so sorry. I can't believe that after all of the fighting you've done to get the transport, this happens. Considering your circumstances I'm surprised they would expect you to share a taxi with someone and also expect you to go alone without your sister.

You could contact the Ombudsman. I was really hoping for a positive experience for you today, I'm sorry this has happened.

Will you keep us updated if you can?

ChristineC1

Hi all,

So to update you as per my situation, Transport phoned me Friday and promised that I am now on the system with exclusive transport and my sister accompanying me whenever I have a new date set. The UCLH management team didn't phone me with a new date as promised. I can feel the cancer in my mouth. Feeling so alone now that my sister has gone back home until next time. Really missing my mam and dad. Have no energy to do anything. At least when I'm busy the day goes quickly. Agoraphobia must ne one of the loneliest conditions to have. I can't see any way forward to change my situation.

😕

ChristineC1

Hi again,

Feeling more positive now that I have a new date set in less than 2 weeks. Transport will liaise with the Head and Neck Team to get the time and venue sorted for booking and formalise it in an email so I have proof when the next taxi turns up. Since the complaint was made and I involved everyone in it they are doing everything to reassure me going forward. I'm so relieved.

The silver lining to all of this is that my Macmillan Nurse is interested in displaying my textiles. I created Cancer 1 Lumpectomy and Cancer 2 Mastectomy after my own personal experiences, with poetry capturing the horror and ongoing psychological effects. I used my own hair in another project after going bald with chemo. So absolutely thrilled that I can give back during Breast Cancer Awareness Week next week. But it will also be lovely to meet her in person after everything she has done to keep me going through this journey. If you would like me to post it just let me know. I could do it on the forum on the day, to mark the event.

Hope everyone else is doing well. I've learned that however bleak the world feels it will always run it's course so that you are able to recover and crack on with life again. Getting a hospice card through the post after dad's cancer last year absolutely floored me but I've managed to pull through it and do what I needed to today to get things sorted. Swings and roundabouts. For anyone who is drowning in grief I found reaching out to a support forum, much like this one, helped get me through the horror and despair. I made real friendships there. You don't have to suffer alone. The world is full of broken people. I'm one of them on so many levels. And yet I keep going. Finding the joy in little things gets me through each day, week, month, year. Asking for help is a strength.

Sun is shining and everything is sparkling in the garden. Joy!

MW123

@ChristineC1

Hi Christine, I’m really glad to hear things are settling down, what a relief after everything you’ve been through. It sounds like your persistence made a real difference, and I hope the next steps with transport and the Head and Neck Team go smoothly.

And congratulations on your textile project! What an extraordinary way to honour your experience and give back. The fact that your Macmillan Nurse wants to display your work during Breast Cancer Awareness Week speaks volumes. Using your own hair, your poetry, your story, it’s deeply moving and incredibly brave.

Please do share it on the forum if you feel up to it. I’d love to see it, and I’m sure many other members would too. Warm wishes, MW123 xx

ChristineC1

Hiya,

I was very disappointed to learn that my work won't be displayed because there won't be room but will be kept in mind for future events. So dissappointed. But I will share here. Didn't realise it's all month so will post later today. Where is best? Do you have an 'event' posting category?

Heard back from complaints about closing my case now that transport have contacted me. Will have to get back to them as so many issues - my exclusive access to transport not on the system, head and neck hasn't booked a time for surgery, transport didn't even have the telephone number for the head of team, patients should not be expected to book in the **** after being accepted for transport. More staff is needed on transport (I was 12th in the queue). Responsibility to book onto the system is needed so that bookings can go smoothly. I'm not even sure that I got the follow up email after the telephone call from transport that complaints had. So more work to do. I'm so very tired now with the stress of it all but also not sleeping.

Here's some detail of my textile: Cancer 2: Mastectomy

Cancer 1: Lumpectomy

V AND A - using my hair after chemo to line the 3D cavity.

I stopped creating textiles after mam. I have had some surges in creativity, creating pieces to be photographed and added to site. Seeing my work posted like this gives me motivation to get back to it.

😀Christine x

Albus_Scope

Heya @ChristineC1 lovely work there! We do have this discussion, where the community posts all their creative endeavors, so that may be of interest to you.

MW123

@ChristineC1

Hi Christine, really sorry your work won’t be displayed, it truly deserves to be seen. Sharing it here sounds perfect, as we enjoy seeing people’s artistic work.

Hope the transport issues ease soon. It’s great to hear you’re reconnecting with your creative side again, your work carries real strength. xx

ChristineC1

Hiya,

Finally have my date, time and venue for surgery, so just waiting for transport to contact me back with confirmation and a text or email as proof of my exclusive ride for myself and sis as ****. Find it incredible that the complaints dept leave it up to the actual dept to investigate itself and as long as apologies are given and a way forward met the complaint is dropped. So I have had to email complaints to leave my case open until my surgery is done. All very time consuming and annoying that I have to liaise between both depts to get my surgery fixed with transport. I should bill them for my admin hours! But seems to be sorted at last. I do want to see a tiered system whereby the NPTS criteria is offered to patients when they fail the initial mobility Q&A. And to recognise that anyone cannot drive sedated, even if they have a blue badge. Issues of difficulty driving and parking in London were mentioned during the call. Unbelievable!

So will be relieved when this is all over. With no treatment after surgery I will be able to recover and get on with life.

Thanks for the great comments about my textiles. I use recycled materials, traditional textile methods with an modern exploration into structure and theme. Hope I can get my drive back when this is all over. Will post more when I'm less exhausted.

😁

Mary_Scope

Love your artwork @ChristineC1! The flower looks so intricate, how long did it take?

That's good news that you have your surgery details now! Thank you for letting us know. Hopefully you won't be waiting to long for transport to confirm their side of things now😊

ChristineC1

Hi Mary,

Thank you. My textiles are hand made, though older works are machine stitched. Everything is created organically and is very labour intensive. The flowers were machine stitched as a double layer and then 'turned out' to create the 3D effect. stitched together to form the flower head.

Will be glad to get this cut out. Feels like it's grown in protest. Wondering if I'll need another ultrasound to check the size.

😲

ChristineC1

Hi all,

Cannot believe what is happening to me. My surgery date has been taken away and the date being offered I had already declined as my sis is unable to do. I had finally sorted the hospital transport drama and was booked in with sis booked for her time off work to travel down. I just cannot take any more stress.

Been chatting to the Macmillan nurse and she gave me info on POhWER - a group supporting vulnerable people. Here's their website: https://www.pohwer.net/ So I've emailed them with a copy of the complaint so far.

I'm just left hanging again until Monday. I had finally been able to move forward with this when I had a date set. I've been battling for months. I'm so exhausted but can't sleep or eat. Can't settle to do anything. My focus is on having this cancer cut out and nothing else.

What a day to pick to do this to me (Mental Health Day). They've pushed me beyond my limits of what I can withstand. Have no where left to go now. My focus was in being pro active in getting transport to accept me. Then I was told surgery would be delayed until early Nov. So being given a date and then taking it away again is cruel. I wonder how many people are treated like this.

🤔

MW123

@ChristineC1

Christine, it is just relentless, is it not. You got everything lined up, transport sorted, your sister booked time off, finally a bit of momentum, and then they pull the rug out from under you. It is not just frustrating, it is cruel.

You asked how many people get treated like this, sadly, far too many. A friend of mine had her spinal surgery cancelled four times. One time she was actually in the hospital bed, pre-med given, ready to go, and then they told her they could not fit her in because the surgery before hers had taken longer than expected. Once the pre-med wore off, they sent her home. Psychologically, it was brutal. It hit her hard, being sent home after all that build-up. She spiralled into a depression she had never suffered before.

It is not just poor planning, it is deeply damaging. And with the junior doctor strikes in July this year, things only got worse. Most surgeries were cancelled across England, including cancer operations. Senior consultants were pulled into A& E cover. Waiting lists did not just balloon, they crumpled. With more strikes planned this year, it is hard to see things improving any time soon.

Christine, I really cannot offer any advice except to say make sure you put in a full complaint about how you have been treated, dating back to last year. Especially how your lump was dismissed as a cyst without a biopsy to confirm it. Had they biopsied it then, they would have found the cancer sooner. That is not just a mistake, it is a failure in duty of care.

Really sorry you’re going through this, Christine. Sending strength, and a big virtual hug your way. xx