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IN TOUCH 鈥� Premier Inn guide dog refusal, Inaccessible cancer treatment information

TX:听 15.11.2022听 2040-2100

PRESENTER:听 听听听听听听听听 PETER WHITE

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PRODUCER:听 听听听听听听听听听 BETH HEMMINGS

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White

Good evening.听 Tonight, we hear about some very good service:

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Clip

My house has been adapted; I鈥檝e had my long cane training and, ultimately, I have the wonderful Megan, the guide dog.

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White

Some very poor service:

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Clip

It鈥檚 really important that anyone who鈥檚 undergoing treatment for a serious condition like cancer understands the risks, the side effects.听 If you don鈥檛 have access to information, it makes it very difficult to have a really informed understanding of what鈥檚 going on.

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White

But we start with what sounds very much like no service at all:

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Clip

I do want the police, yeah, as soon as possible because I don鈥檛 feel safe here, and my girlfriend, now.

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Then you should leave.

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Okay, well, if that鈥檚 the case, then all I can do is advise you to withdraw from the hotel.听 You don鈥檛 have to stay there.

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But this is discrimination against my girlfriend and the guide dog.

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Yes, I appreciate that鈥�

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If you have a guide dog, you would know鈥�

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I鈥檝e shown it to鈥�

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White

Far too often we hear about guide dog owners being refused service for a variety of reasons but this case, I think, takes the biscuit 鈥� the dog biscuit that is.听 Angharad Paget-Jones is here to explain what happened to her a few nights ago at a Premier Inn hotel in Enfield.

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And Angharad, just first of all, can you explain what was going on in that clip that you and your boyfriend actually recorded at the time?

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Paget-Jones

That clip you just heard was just part of the recording.听 They鈥檙e happened to be security and two members of staff in my room.听 They had barged in claiming that my dog was a fake guide dog, even when they had been presented with the Assistance Dog UK book that apparently anyone could buy online.

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White

So, that was what was happening but that鈥檚 towards the end of the whole incident.听 Just explained what, initially, when you checked in, when you arrived at the hotel.

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Paget-Jones

Yes, so, we arrived quite late, it was about eight in the evening.听 We checked in.听 There was no issues. There was quite a long walkway between the door of the hotel and the check-in desk, so they would have seen a dog in hi-vis uniform walking in.听 We went to the lift, again there was a little bit of a walk, so, again they had every opportunity to see Tudor.听 No issues.听 We got to the room.听 I had then taken some medication for my migraine which makes me very sleepy, so I had gone to sleep.听 Then about half past nine, I believe, my boyfriend then took Tudor out for a comfort break.听 It is on his way back that he was stopped by the same lady who checked in claiming that there was no dogs.听 He showed her the lead, with the flash on that says he鈥檚 a working guide dog and then his collar, where he鈥檚 got the tag that says guide dog and his chip number on.

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White

Can I just ask you before we get to that 鈥� are you often asked for ID to authenticate your guide dog?

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Paget-Jones

In the four years I鈥檝e been a guide dog owner this is the first time.

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White

Right and so why on earth do you think that the staff would think that Tudor was a fake guide dog?

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Paget-Jones

Honestly, I don鈥檛 know, I was asleep at that point.听 Maybe it鈥檚 because my boyfriend was walking him but Tudor still has to wee.

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White

Right.听 So, that happened when your boyfriend came back in.听 And then they came to your room.听 What on earth happened then?

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Paget-Jones

So, there was a knock at the door, which had woken me up, so I answered the door and used the door to hide my modesty because I was asleep, I wasn鈥檛 fully dressed, I was just in a t-shirt and my underwear.听 So, I used the door as my modesty and to see what they wanted.听 And before I could even say 鈥� look, hi, can I help 鈥� I was bombarded with demands that my dog needed papers and official documents.听 Obviously, I鈥檇 just woken up, so I was very confused and I was like 鈥� okay, could you get me your manager 鈥� because at no point did anybody identify themselves to me, that who they were.听 And at this point it was almost 10 o鈥檆lock at night, so it鈥檚 almost the middle of the night鈥� And at that point I closed the door.听 Seconds later, they used the key card to barge their way into my room, which was terrifying, because, again, I didn鈥檛 know who they were, telling me that closing the door was aggressive, that we had to leave, that my dog was obviously a fake because, in their words, just look at him.听 He鈥檚 a golden retriever, he鈥檚 quite a large one too, so you know.

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White

A conventional guide dog or conventional breed for a guide dog to be, yeah.

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Paget-Jones

At that point, my boyfriend had taken my Assistance Dog UK booklet out of my bag, which is the only paperwork we carry and showed the ID and I was then told it was an obvious fake, that real guide dogs had proper papers.听 Security had then come up to the room.听 And, as you heard in the clip, said if it鈥檚 a real guide dog it has documents.

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White

Right.听 And at some point, your boyfriend called the police, which is what we were hearing at the beginning.

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Paget-Jones

Yeah, because they threatened to phone the police if we didn鈥檛 leave, so we thought we鈥檇 beat them to it.

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White

And what was the police鈥檚 reaction?

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Paget-Jones

That it wasn鈥檛 their problem.听 The hotel was claiming I broke their policy by bringing a dog in that wasn鈥檛 an assistance dog and the police said because we broke their policy we had to leave.

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White

So, ultimately, you did leave the hotel. What contact have you had with them since and what have they said to you?

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Paget-Jones

I鈥檝e just had an email saying they were looking into it and then I had a second email from the executive team saying they were looking into it and they would issue a refund.听 I鈥檝e not responded to it; it鈥檚 gone to my legal team.

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White

Now we, obviously, asked Premier Inn to come on to the programme to explain, if they could, they told us that no one was available.听 Initially, they produced a public statement in which they said: 鈥淲e were shocked and appalled to see the upsetting Twitter thread alleging that a guest was asked to leave one of our hotels in Enfield.听 An urgent investigation is already underway.鈥澨� They鈥檝e subsequently been in touch with us directly to say: 鈥淯nfortunately, on occasions, things do go wrong and quite clearly in the case of Angharad and Tudor badly so.听 We apologise and have reached out to Angharad to speak with her directly.听 Assistance dogs are, of course, welcome in all our sites and the individuals who鈥檝e advised otherwise were clearly seriously mistaken.鈥�

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What鈥檚 your reaction to that?

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Paget-Jones

I鈥檝e had no offer of a meeting, so that鈥檚 a lie.听

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White

So, what are you proposing to do?

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Paget-Jones

I don鈥檛 know yet fully, I鈥檒l be honest, but I know it鈥檚 going to take a lot more than an apology at this point because so many other people have come forward to say it鈥檚 happened to them, it鈥檚 not an isolated incident.

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White

Angharad Paget-Jones thank you very much indeed.

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Now another issue about appropriate service and one which could have even more serious consequences in the long run than what we鈥檝e just heard.听 Many of you have been telling us that over the last six years the NHS has an obligation to give blind and partially sighted people information in a form they can read themselves but this just isn鈥檛 happening.听 And the latest listener to contact us about this is Anna Tylor.听 Ring a bell?听 Yes, she is chair of the RNIB, she鈥檚 partially sighted herself.听 Anna is currently undergoing treatment for breast cancer and she joins us.

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So, Anna Tylor, just explain how you need communication sent to you and the problems that you鈥檝e been experiencing.

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Tylor

The way I like to receive information is in large print, that might be in leaflet form or it might be way of electronic file which I鈥檓 then able to print up as a large print document.听 I have a sort of a pile of papers on my kitchen table, all related to my cancer treatment, all of which are not readable for me.

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White

Why is this because they do have facilities to do it and I think you have had large print documents but even when you鈥檝e had them there have been problems with them?

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Tylor

Yes, the very first follow-up letter I received did come in largeish print but things came with bits of paper missing, so you鈥檇 get the left-hand side of the page printed but not the right-hand side, so you might miss the critical bit at the end of the information.听 But, by and large, things have come in standard print and sometimes in print which I would consider to be even smaller than standard.听 And I think there are very powerful reasons why people should receive information in a format that works for them and that鈥檚 why the Accessible Information Standards are there in the first place.听 It鈥檚 really important that anyone who鈥檚 undergoing treatment for a serious condition, like cancer, understands what the options are, understands the risks, the side effects of everything from chemotherapy to anaesthesia to radiotherapy and so on and so forth.听 If you don鈥檛 have access to information, it makes it very difficult to have a really informed understanding of what鈥檚 going on and it makes it very difficult for clinicians to really satisfy themselves that you鈥檝e understood what鈥檚 happening to you.听 And we know, through recent inquiries into other areas in the NHS, that this question of good access to information feeds directly to patient safety and to good health outcomes.

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White

Have you not pulled rank, Anna?听 Have you not tried the 鈥� do you know who I am 鈥� that sort of thing?

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Tylor

No, I see no reason for doing that.听 I would expect to receive, regardless of who I am, the same treatment as anyone else and I think that that鈥檚 been the thing that, if you鈥檒l excuse the pun, has been an eye opener.听 I knew the situation was poor but it鈥檚 been a really uncomfortable process for me.

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White

And just remind us, what are the responsibilities of the NHS and it鈥檚 any part of the NHS, isn鈥檛 it 鈥� GPs, hospital trusts, whatever 鈥� what are they supposed to do?

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Tyler

So, the Accessible Information Standards are really clear that it鈥檚 a patient centred approach.听 So, what works for me; what鈥檚 the best way for me to receive information.听 It鈥檚 not just about bombarding patients with all kinds of alternatives that might not work for them.听 And particularly for older patients who might not be tech savvy, may not have access to the internet, it makes it that much harder.听 So, it鈥檚 about receiving information in a way that is meaningful to the patient who鈥檚 at the centre of treatment.

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White

The Chief Executive of Hampshire Hospitals NHS Foundation Trust 鈥� bit of a mouthful that 鈥� Alex Whitfield, told us in a statement that: 鈥淓nsuring equal access to healthcare is of the utmost importance to us and it is clear, after Ms Tylor鈥檚 experience, that we鈥檝e fallen short of the standards that our patients need and deserve.鈥澨� Alex, unreservedly, apologised.听 She says they are vigorously investigating the issues raised.听

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Anna, I think you鈥檙e meeting Alex Whitfield this Friday, what are you going to be saying to her?

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Tylor

I鈥檇 like it to be a constructive way forward and for me this is about both of us understanding what鈥檚 happened, from her point of view and from my point of view and of coming up with a pathway in which we can move forward together.听 I don鈥檛 want, whoever comes after me through this process, to experience what I鈥檝e experienced.听 And we know that many NHS trusts are still non-compliant with the Accessible Information Standards.听 So, I very much hope that what we will find we鈥檒l be able to carve out together is a way forward with some binding outcomes for blind and partially sighted people undergoing treatment in Hampshire Healthcare Foundation Trust into the future.

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White

Anna Tylor, thank you very much indeed.

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So, is there no good news in the world?听 Well, yes, I鈥檓 glad to say there is.听 At this time of remembrance for what our service men and women do for us, it鈥檚 good to hear of people who feel that they鈥檝e had really good help and support with the onset of their vision loss.听 There was a time when you had to show that your vision problems were the direct result of your time in the services if you wanted to get help.听 Thankfully, that鈥檚 not been the case for many years now.

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Janice Mitchell was a radio operator in the Royal Navy in the 1970s.听 Subsequently, she was diagnosed with glaucoma but four years ago she had a sudden sharp loss of vision, more or less out of the blue, and she feels that since then she鈥檚 had fantastic treatment and support.

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Janice, first of all, just explain what happened with your sight four years ago.

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Mitchell

I went to my bed on the Friday night with 100% vision, wore reading glasses because I鈥檓 in my 60s and that鈥檚 normal, woke up in the morning, still had central vision, which was slightly blurry but I thought I was just tired, until I tried to go through the doorway and bounced off the wall.听 Every time I walked along a corridor or into the kitchen, I suddenly became very familiar with sides of doors and banging heads off the cupboards that I had known were there for 10 years.听 So, I immediately thought there鈥檚 a problem and went to the local optician who sent me to hospital, saying to me 鈥� you鈥檝e had angle closure attack caused by your glaucoma.听 But, unfortunately, for me I had it in both eyes at the same time.听 When I left the navy, I became a nurse, so I knew that any damage caused by the glaucoma was permanent.听 So, I went to the hospital and it was then confirmed that overnight I lost 60% of my vision.听 I have some central vision remaining but total night blindness.

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White

Right.听 Now we told people this was a good news story and they鈥檙e probably wondering what the good news is at this point so, do tell us about the help that you鈥檝e had and who you鈥檝e had it from.

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Mitchell

I鈥檝e had help, incredible help, from two different agencies.听 First of all, it was Guide Dogs.听 Phoned them, they came out, carried out various assessments and during that the lady said to me 鈥� by any chance have you ever done any kind of military service.听 And I said 鈥� yes.听 So, her answer was 鈥� that is fantastic because there鈥檚 a lot more help now can be given to me through military charities.听 So, I鈥檓 one of the lucky ones, which really shouldn鈥檛 be said because we should all be entitled to as much help as we need.听 Having said that, the charity that looks after me used to be called the Scottish War Blinded, which, again, gave the implication you had to be blinded on active duty.听 They鈥檝e now changed it to Sight Scotland Veterans and it applies to anybody that has served 24 hours in the services is entitled to help from them.听 They [indistinct word] and have given me basically wrap around care in conjunction with Guide Dogs.听 My house has been adapted, I鈥檝e had my long cane training and, ultimately, I have the wonderful Megan, the guide dog.

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White

So, what鈥檚 the thing that鈥檚 made most difference?

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Mitchell

The biggest impact on me is, obviously, my guide dog.听 She has given me my freedom back.听 It doesn鈥檛 matter now if it鈥檚 dark when we come home in the winter. 听I will go out because 100% this girl will bring me home safely.听 Whereas last winter, I just didn鈥檛 go out after lunchtime because it was still very much a learning experience for me walking with a white cane when I couldn鈥檛 see, I just wasn鈥檛 comfortable.

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White

Just one more thing, Janice.听 You鈥檝e been very positive but what鈥檚 the prognosis now about your sight?

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Mitchell

I鈥檓 on treatment, obviously, and I鈥檓 seen every three months.听 I鈥檝e had numerous operations, numerous eye drops.听 All that we鈥檙e really hoping is to stabilise the condition.听 Eventually, I will go totally blind.

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White

How are you preparing for that?

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Mitchell

I took advisement on that because I thought 鈥� how do you actually prepare for your world suddenly being dark.听 So, I was advised by Guide Dogs to go round my own house and put a mental image, a map, of my house in my head.听 After you do that don鈥檛 move any of your furniture.听 I think you can prepare for it in that way but you really cannot prepare for it emotionally.听 But I won鈥檛 really know and hopefully, it鈥檒l happen in 40 years鈥� time when I鈥檓 118 and I鈥檒l not notice. You know, I mean, nothing prepared me for what it was going to be like to lose that 60% of vision and at the beginning, I thought 鈥� I don鈥檛 know if I can actually manage this.听 But then that鈥檚 where the navy spirit and the nurse spirit kicked in and went 鈥� of course you can.

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White

Well, Janice, maybe you should listen next week.听 That is the issue that we鈥檙e going to be addressing 鈥� can you prepare for a diagnosis like that and if so, how.

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We鈥檒l have three people who are at different stages along that path sharing their experiences.听 And do tell us yours, you can email intouch@bbc.co.uk, you can leave a voice message on 0161 8361338 or go to our website bbc.co.uk/intouch.

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From me, Peter White, producer Beth Hemmings, all our guests and studio managers Tom Parnell and Nat Stokes, goodbye.

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