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

ChristineC1
ChristineC1 Online Community Member Posts: 4 Listener
edited September 21 in Transport and travel

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.

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  • OverlyAnxious
    OverlyAnxious Online Community Member Posts: 5,034 Championing

    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
    MW123 Scope Member Posts: 1,504 Championing
    edited September 21

    @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
    Kimi87 Online Community Member Posts: 7,013 Championing
    edited September 21

    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
    Rachel_Scope Posts: 1,842 Scope Online Community Coordinator

    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
    ChristineC1 Online Community Member Posts: 4 Listener

    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 ****

  • Rachel_Scope
    Rachel_Scope Posts: 1,842 Scope Online Community Coordinator

    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
    Rachel_Scope Posts: 1,842 Scope Online Community Coordinator

    Update above from this new post

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