64. Dorothy Hall - age discrimination in the NHS

In this powerful episode, Gill Phillips chats with her long-time friend Dorothy Hall, a former social worker and fierce advocate for fairness. They explore the realities of ageism in healthcare.

At 82 and a half, Dorothy brings a wealth of lived experience—as a professional, a family carer, and now as someone navigating the NHS as an older person.

She highlights the stark contrast between systems that dismiss patients based on age and those that embrace co-production and shared decision-making. 

Dorothy shares two shocking yet inspiring stories:

• How she was abruptly denied essential treatment for a genetic condition upon turning 80—without warning, discussion, or a clear clinical rationale
• Her journey to access an innovative light therapy treatment for macular degeneration, which remains largely unknown and unavailable on the NHS despite its life-changing potential

Instead of accepting the system’s failings, Dorothy took matters into her own hands—seeking a second opinion, finding more compassionate healthcare providers, and ultimately reclaiming control over her own care.

Lemon lightbulbs 🍋💡🍋

🍋 Co-production doesn’t stop at 80 - see the person

🍋  Healthcare should be about needs, not numbers – age alone should never determine whether someone gets treatment

🍋 Patients shouldn’t have to be experts in NICE guidelines or fight for info

🍋 Don’t push people into complaints—listen first – most patients don’t want a fight, they just want fair treatment

🍋 The complaints process takes a huge toll on people

🍋 Empathy transforms healthcare

🍋 Joint decision-making rocks!

🍋 Short-term cuts create long-term costs – and unnecessary suffering

🍋 Rigid NHS systems fail real people – bureaucratic barriers, arbitrary cut-offs, and poor communication leave people helpless

🍋  Being  'outside the system' can be a nightmare

🍋 Seek a second opinion

🍋  Vision loss is life-changing - NHS should embrace this proven, non-invasive macular degeneration preventative treatment

🍋  It’s not just about vision - age-related sight loss affects independence, mobility and mental health

🍋 Patient advocacy is powerful – knowing your rights, pushing back, and seeking alternatives can change everything

🍋 Honest communication matters!!!

Links:

Encouraging results from light therapy study for dry age-related macular degeneration - study published by the Macular Society 

#WIGO - When I Get Old campaign - Gill Phillips chats with Angela Catley

✨ A must-listen episode for anyone passionate about health inequalities, patient advocacy, and how we can build a healthcare system that truly listens to people—at every stage of life.  🎧

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Chapters

• 0:00 Introduction of background – Gill Phillips and Dorothy Hall
• 3:42 Dorothy reflects on ageism and age discrimination
• 4:41 Gill reminds listeners about the episode with Angela Catley #WIGO - When I get old
• 6:23 Being refused services because of your age is alarming and disturbing
• 7:16 Systems thinking ... but Institutionalised procedures and systemic challenges are rife in the NHS
• 9:45 Dorothy starts to tell her story about haemochromatosis, a genetic condition
• 10:40 The bombshell - Happy 80th birthday ... but no more treatment for you!
• 11:48 Why are they ending the treatment? asks Dorothy
• 13:30 "Oh well, it would have to be really, really bad" !
• 15:00 'Outside the system' - nightmare!
• 19:29 The complaints process can be very damaging to the individual
• 23:26 Seeking to put lived experience to good use – but Dorothy is too old!
• 25:50 Seeking a second opinion - what a difference!
• 27:00 Joint decision making at its best
• 30:40 Dismissed - Dorothy describes the feeling of utter abandonment and the toll it took on her
• 32:06 The nurse practitioner - one of the 'golden people' in health care
• 34:05 The challenges of age-related macular degeneration
• 34:10 Age-related macular degeneration - listen to the whole story, it brings HOPE!
• 43:11 Health inequalities, human impact and systemic impact - and opportunities for PREVENTION
• 47:00 Summary of some lemon lightbulbs - HONEST COMMUNICATION MATTERS!

Transcript

 Dorothy Hall - age discrimination in the NHS

Published: Sun, Feb 16 Feb 2025

SUMMARY KEYWORDS

Whose Shoes, age discrimination, NHS treatment, haemochromatosis, blood tests, institutional procedures, joint decision-making, macular degeneration, PBM treatment, health inequalities, patient advocacy, systemic issues, positive perspective, complaint process, healthcare reform

SPEAKERS

Gill Phillips, Dorothy Hall, Colin Phillips

Gill Phillips  00:00

Gill. My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to coproduction. I was named as an HSJ100 Wild Card, and want to help give a voice to others talking about their experiences and ideas. I love chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of healthcare, and like to hear what other people think, or perhaps even contribute at some point, Wild Card Whose Shoes is for you. 

Gill Phillips  00:46

Welcome back everyone. It's the first Wild Card Whose Shoes podcast of 2025, Happy New Year to you all, although apparently you're not allowed to say that after the 20th January. Who knew? Iit's taken me a while to get my act together, but hopefully you will find it worth the wait. Today, I'm talking to one of my oldest friends in both senses of the word. In my previous life, before I set up Whose Shoes, I worked for more years than I care to remember for the social care department of Coventry City Council and Dorothy Hall was my favorite social worker: insightful, caring, knowledgeable, and always looking to do the best she possibly could for those she served, both the people using services and the teams that she managed. I learned so much from her, and I still do in so many ways. Dorothy was pivotal in my decision to jump ship and set up Whose Shoes. I had been asked to do some quality improvement work with her team who supported people with learning disabilities. I enjoyed talking to everyone and trying to understand what the underlying issues were. The more I investigated, the more I learnt that things are very different when you look at them from the other side of the fence. I have an aversion to top down management, and without going into detail, I saw that people like Dorothy and her staff were the diamonds within the organization, but could sometimes be scapegoated. It was an interesting time. There are so many things I could talk to Dorothy about on the podcast, as well as her professional experience. She brings so much lived experience and wisdom. She has experience of navigating the interface between systems, most notably social care and the NHS, including as a family carer. Indeed, I've just remembered that Dorothy wrote a blog for my 'In your shoes' series about 10 years ago, talking about caring for her mother in law, who was living with dementia in Belgium. 

Dorothy Hall  03:05

Gosh, I've forgotten about that!. 

Gill Phillips  03:12

And now Dorothy is getting older herself. She is experiencing age discrimination in the NHS. As her friend, I've followed the ups and downs of her story, and it's been an eye opener, so I was thrilled when she agreed to talk about it on the podcast, and indeed, she's here with me our first in-person podcast and trying out some new technology, aren't we, Colin? 

Colin Phillips  03:39

We are!

Gill Phillips  03:42

So welcome, Dorothy. Can you tell us a bit more about yourself and how you'd like to kick off today? 

Dorothy Hall  03:48

Wow, thank you. It's a mixed blessing being invited to do this. On the one hand, I'm quite happy to talk through my experiences, but it also feels a bit like exposure, kind of revealing bits of how I've thought about what's happened to me as I've grown older, which has been quite a revelation. I'm now 82 and a half, and don't like to face up to the fact, not because I'm not comfortable with it, with myself, but it exposes you to negative ageism, which is part of what I'm going to talk about later. So yes, I'm very pleased to be doing this, but it has made me think through a lot of issues associated with people of my age which are quite negative.

Gill Phillips  04:41

That's fascinating. I mean, the nearest I've come to this Dorothy, in terms of the podcast series, was ... I did a great episode with Angela Catley. Angela is leading a campaign called, 'When I get old', #WIGO is the hashtag and. And it's such an insight, really, into things that we just accept that happen to old people, people as they get older, but we don't want for ourselves and Dorothy for the people listening has been incredibly helpful to me when my own incredibly feisty mum (some of you might know her from Gill's mum on Twitter), had to accept the inevitability of getting older and going into Assisted Living, as it was, and Dorothy was there for her all the way. So this is very special today, and it's bringing back lots of thoughts and memories, and you know how we're all getting older, and what we expect from systems like the NHS, what's fair? And I think the two examples that Dorothy is going to share today are really very, very thought provoking and a real opportunity for people, the powers that be, to think, "Well, is this fair? Is this part of health inequalities? How do we want things to be?" And I love the way that you know, I think Dorothy is going to come to it from a very positive perspective, in terms of a learning opportunity, rather than a complaint as such.

Dorothy Hall  06:23

Absolutely when I thought about doing this, age creeps up on you, and all of a sudden you're confronted by people who see you from the position of your age, which is actually quite alarming and disturbing, because you don't think of yourself in the way that they see you. So when services are refused because of age or clearly, age is the biggest consideration, it's actually quite shocking in a personal way, and that's what happened to me. So yes, I want to talk about that, but I want to talk about it in a positive, not complaining way, because it requires very little adjustment to actually make it more of a positive experience.

Gill Phillips  07:16

And I think Dorothy, the way that you see whole systems, is really, really valuable here, because everybody, you know, if they're in their little silos, they've got their budget, and I see it right across the Whose Shoes work that I do, that it will be a short term saving to do something, to cut something, to not provide something now, but in terms of the ripples around the system. So you've got, from a system point of view, but obviously also very much from the person's point of view, and what's actually good for their wellbeing and their long term health, that you save a bit of money at one point in the system, and you cause shed loads of problems further down the line! And I think your story is really relevant to that as well.

Dorothy Hall  08:02

Absolutely I see both of the conditions I've got linking health care, social care and all sorts of add-on bits like access to transport, access to information. People viewing you in a certain way that stops you having access, but also systems that are built up around a certain set of processes and procedures. And I've got one very good example about that to do with blood tests, where you suddenly find that organisations are set up with institutional procedures that mitigate against people who are no longer in the system that's been set up. That sounds a bit kind of convoluted, but that's something that happened to me, which took me aback, and I could see straight away how processes and procedures are very institutionalised, and once, once you're not in that process and procedures, you're on the outside of an institutionalised process.

Gill Phillips  09:15

That's really interesting. Dorothy, so as I understand it, you were refused a procedure that was pretty much directly to do with your age. Was it your 80th birthday? Happy birthday, Dorothy!!

Dorothy Hall  09:26

Yes, absolutely. I got a condition called haemochromatosis, where I had three monthly treatment, which consisted of of giving blood, basically called a Venesection,

Gill Phillips  09:43

And I think you've had that for about as long as I've known you.

Dorothy Hall  09:45

But it's actually a genetic condition. I've my brother and sister, and they had it. My sister's now dead, but the three of us had it, and I was diagnosed with the genetic condition 20-30, years ago, following on from my brother being diagnosed. So I was part of the regular treatment and monitoring in the local hospital and received treatment up until I was 80, and the way I found out that I was not going to have treatment was really, really shocked me. I went in one day, when I was 79, to have the Venesection, and the doctor who was fiddling about with the needle that takes the blood suddenly said to me, "You do realise, don't you, that we stop at 80. We stop this at 80". And I said, "Well, that's interesting, because I'm 80 next month". And she said, "Oh, good heavens, yes, you are, aren't you? Oh, well, this will be your last one." What a way to talk to people. Yes, the only inclination I'd had about that was before that was one or two of the nurses had made comments to me, which I hadn't really registered, about the procedure being stopped. They were thinking about stopping the procedure at 80, but I hadn't really taken it in, and nobody had talked to me formally about it whatsoever. So the first time that a doctor had said it to me was on this occasion, and that was it really. She said, "Well, this will be your last one." And I stood up after they had taken the blood thing out of my arm, and said, "Um, well, okay, is this it?" And she said, "Yeah." And I said, "Well, it feels a bit like leaving school" 

Gill Phillips  11:32

(Laughter)

Dorothy Hall  11:35

And went off, went off.

Gill Phillips  11:37

And you'd had no chance to prepare for that.

Dorothy Hall  11:40

I had no preparation, no inclination, no idea, and was really quite shocked by it. This, my birthday is at the end of October, so this would have been, I think, in probably the September and they, I think she said to me something like, "Oh well, we'll send you an appointment". So I then got a letter through the post offering me an appointment to the same doctor a couple of months later, where I asked for more information and was told, "Well, there are competing risks when you get to this age. There are competing risks, about following this procedure." And I said, "Well, can you explain to me more about the risks?" And she said, "Well, there's some research". And I said, "Well, can you send me the research?" And I asked a few other technical questions about ... Oh, she said, "We'll follow up". And I said, "Well, what does follow up mean?" She said, "Well, you'll get a one yearly appointment to see a doctor with a blood test". And I said, "Well, I find that quite shocking, ..." because this was just following the pandemic, and I knew that my blood levels - haemochromatosis is retention of iron - and I knew that my blood levels had risen through the year of the pandemic when I hadn't received treatment. So I anticipated that if it rose that much in a year, a year on after being 80, as long as I lived, it would rise quite considerably. So I pointed that out to her, and she looked at my record on the computer and said, "Well, if you think how long it took you to get to this, the level of blood iron that you got, it's not going to rise that quickly, is it?" I was completely mystified by all of this. And said, "Well, you know, at what level will you retreat me?" And she said, "Oh well, it would have to be really, really bad" or something like that. 

Gill Phillips  13:45

Sounds scientific!

Dorothy Hall  13:46

I can't remember the exact words, but it was absolutely no detail, no sharing of information, because I do remember very specifically asking if I could see their research, and being assured that yes, they would send me details of the research. I did ask that she was offering me a one yearly appointment. .And that comes back to my comment about institutionalised procedures, because I think she must have felt quite bad about it, because she did at one stage say to me, we haven't handled this very well. You have got grounds for a complaint. And I remember saying to her, it's not a question of complaint, it's a question of feeling that I'm being treated like this because I'm of age with no real explanation or justification. And I said I spent my whole life working as a social worker, really fighting for people to be treated decently, inequality, and here I am,   just because I'm 80, being treated like this. And she said, "Well, we'll, we'll do, we'll do a second blood test. We'll, we'll ...you can have a blood test in the summer, in six months, if you like."

Gill Phillips  15:03

 Negotiation!

Dorothy Hall  15:04

Yeah. So okay, and that led me to my previous comment about about institutionalised procedures. Because what happened was a lot of time went by where I wondered what to do. But I did go and get the six monthly blood test, but then I couldn't get the result because I was outside the system.

Gill Phillips  15:26

That's a classic, such a classic. 

Dorothy Hall  15:28

So it led me to see how institutionalised this system is. Once you're in the system, you go and get the blood test. You know who to contact for the result. Somebody tells you what the result is, then you're told whether you need treatment or not, and it feels comfortable to be part of this organisational approach that you fit into but the end of this story is, I couldn't get the results. I rang I remember this. I rang up to say, "Oh, I've had the blood test. Could somebody tell me the results?" "Oh, no, don't bother. Don't, don't. We can't give you the results. We haven't got them. You'll have to go to your GP". Rang the GP. GP didn't know anything about it, hadn't got the results, didn't know what to suggest. Then I re-looked at the letter they'd sent me after I'd had my treatment discontinued and I had the December/ January appointment when the doctor had told me that I would just be followed up once a year, whatever. And the letter actually said, to the GP, we will continue with maintenance treatment, but they hadn't so

Gill Phillips  16:48

Sso completely inconsistent.

Dorothy Hall  16:49

Yeah, it was completely inconsistent. It wasn't even ... there was no follow up in giving me any information, no offer to show me any research, no no real information about why at 80 there were competing risks. During that time, I'd actually looked up the research myself, and I did find that with some research in New Zealand, where they'd instituted a programme of finishing people at 80, and they had given an overview of why and how it was managed, and in retrospect, looking back if they'd actually applied some kind of information, honest sharing of information, and treated me as if I was worthy of that kind of information. I can see that you maybe would have arrived at a decision, a co-decision  if you like, co-participation

Gill Phillips  17:54

All the things that are talked about in the NHS,!

Dorothy Hall  17:56

All the things that are talked about in the NHS that, if you'd felt remotely valued, and that there'd been an offer of co-decision making, which, incidentally, is relevant to what happened to me later, I can see that it could have been a much more comfortably managed process. But as it was, there was no information, a badly worded letter, a dismissal, an offer of this blood test, which actually proved impossible to find the results of, and then nothing. I then saw, six months later, I saw the consultant that I was nominally supposed to be under, and she actually apologised for the letter, and said when she looked at the letter that I'd been sent before she said, "Oh, we didn't treat we didn't do this very well, did we?" And gave me some explanation about how consultants dictated into a Dictaphone and they weren't typed properly, etc, etc. And then more or less, went over what the previous doctor had said to me, that they would monitor me on this once a year blood test and check up. But couldn't actually tell me at what point this would constitute them offering me any other treatment. So I said, "What is the point?"I remember this very clearly. "What is the point of this appointment?" And s   he said, "Well, that's a very good question. We thought that it would be reassurance"

Gill Phillips  19:23

Reassurance?

Dorothy Hall  19:27

 Yes

Dorothy Hall  19:28

Or back, covering perhaps? Or ...

Dorothy Hall  19:29

Well, whatever, yeah, whatever.. And I was just appalled, really. And I thought I just do not want to repeat this. And eventually I canceled the following yearly appointment, but I didn't do that for ages afterwards because I couldn't make my mind up what to do. I considered complaining, the whole year I'd considered complaining, but complaining seems to be a negative process that has all sorts of repercussions for yourself. You have to maintain the level of anger and outrage which is self defeating and damaging. Or you have, you know, you have to kind of maintain this anger, and

Gill Phillips  20:13

You have to hang on to all the detail. You have to have it in your head. You have to think of clever words to put down. You have to think, "Am I doing the best I can here?" Because they'll be trying to refute each point, and you didn't even want it to be a complaint. It's a very negative direction,

Dorothy Hall  20:31

Totally negative. And in the middle of all of this, you confront the fact that you're 80, and the confrontation of that was, well, you know, the NHS is in this terrible mess. There's all these people who need treatment. Why am I making a fuss about a procedure that will extend my life? And you kind of get into this negative spiral of suddenly confronting your age and you're right to have treatment, if you like. And that in itself, has all sorts of spin offs, because you start to feel very negative about yourself and making an issue you also, I also, confronted the fact that they hadn't bothered to give me any kind of information that would make it make sense to me, which is a real dismissal, dismissing somebody who I think I'm ...  I've got quite a good grasp of systems and procedures, and having spent my life managing budgets and managing services. I think I understand how life is managed. So you suddenly are confronted with the fact that people write you off at 80 in a way that you hadn't anticipated, which then then turns in on you, and you see yourself as people see you, and think, "Well, what's the point?" So I kind of went through a very, very negative period of seeing myself at 80 and thinking, What right have I got to, why should I... I don't want to put myself through the whole complaints procedure of being angry and keeping it at the front of my head, where I'd rather get on with my life. So I went through a process of rationalising it all, and then decided, okay, I'll I'll deal with it in another way. So I looked at everything I could about the condition I'd got, how I could manage it by staying fit without having any medical intervention, so attention to diet and exercise, etc, etc, I really worked at that, and that kind of confirmed to me by the time I got to the second appointment. So it's a year on when this doctor said to me, when I asked what was the point of the appointment? She said, "Well, it's a good question". I decided that was it. I was not going to go back to that department. Even if I did complain, what would I be complaining about? I didn't want  to go back there, because I felt so dismissed by them. There was no way I would have welcomed them restarting my treatment, even if they would have rethought it, and I didn't understand under what circumstances they would rethink it. Incidentally, along the way, I had done a bit of research in that. I'd contacted a National Society for the condition. I've got a national support group, and they were quite shocked. They'd not had any other contacts from people who been refused treatment at 80. But they did tell me that there were no national guidelines about treatment, about what age to stop, which gave me, and I think this was during the year, which also was one of the reasons I didn't complain, because I thought in order to complain, effectively, you would need to show that they were acting out of line with a national procedure or national guidelines. So and then when I discovered there were no national guidelines. It kind of removed the sort of positiveness about a complaint, if you like, or gave another reason not to complain. So I offered. I contacted the organisation that was leading the national guidelines and asked if I could contribute, and they said, "No, you've got too old, you've got to be a clinician working in the system, or you've got to be part of an organisation that represents people". And I was neither.

Gill Phillips  24:50

So you're a patient with lived experience of the condition for many, many years, but you don't fall into those boxes. 

Dorothy Hall  24:57

Yeah, I did go back to the support group. It, and I can't remember what they're called now, because I hadn't ... I've not bothered with them since, and they said that they were contributing to the national guidelines. But whoever I talked to didn't know what their contribution was, so I just felt it was, it was a bit pointless. So I kind of spent a year ruminating on all of this, thinking I'm not going to get anywhere by complaining. I'm not going to if, if this is the local hospital policy, I'll end up complaining, getting a nice letter back. And the only effective complaint I've got, really, is the way I was dealt with, which I didn't, couldn't I just didn't want to go through the negativity or all of that. So I decided that I would look after myself, but also I would seek a second opinion. 

Gill Phillips  25:50

Brilliant!

Dorothy Hall  25:51

Yes, so I did. I eventually got myself referred to a clinician in another neighboring authority who I took along my blood tests and went to see this doctor, and before I'd even got into what had happened to me, or whatever, whatever I felt about it, or whatever my condition was, he said to me,- I think I just explained that I'd been told I was no longer eligible for treatment in Coventry system because I was 80, but with no other explanation - And he immediately said to me, "Well, just looking at you, I can see that you are fit and and well and able to understand what's going on. Do you want to be referred back into the NHS? And I was so grateful, that I didn't have to leap through hoops and prove my fitness.

Gill Phillips  26:58

 Yeah, that was the beginning of the conversation. Rather than ...

Dorothy Hall  27:01

That was the beginning of the conversation, rather the end of the conversation. And he then went on to say he looked at my blood results, and we talked. He talked about a few technicalities around my blood results, and said, "We'll treat you to keep you at a certain level". And he said, "My policy ..." and this was the best bit, "My policy is to make joint decisions that there will come a time when you feel that you don't want to carry on with this, and at that point we can decide whether you do want to carry on with this". I was so I was so pleased. I was so delighted that that he'd taken that approach with me. So he immediately, while I was there, sent an email to ... the service is actually managed by an advanced practitioner nurse. And he, while I was there, sent an email and said, "This person will contact you". And that was it. I was just so taken with the kind of the different tone and the feeling of not being dismissed.

Gill Phillips  28:15

I think seeing the person, ... it's a cliche, isn't it? ... but you suddenly felt seen ... as Dorothy, who happens to be 80,... you know your condition and what works and what's making you feel good.

Dorothy Hall  28:30

And I was surprised at how easy it was, ... because I thought, well, I don't know what I thought. Really, I'd felt that I'd got to do something. And having dismissed the ideas that a complaint would get me anywhere, I didn't really know what to expect. So I was so pleased.

Gill Phillips  28:51

Well, I'm really pleased that you were able to channel your energy - because it is energy -  to something that's actually positive and has come up with a result for you that .... I mean, the bits I love about that story, that second doctor, you know, you're talking about joint decision making, but like looking to the future, you know he's he's saying that realistically, you know, you are a certain age, and you might be wondering, when you get home, how long might this go on? ... what's going to happen? And he's pre-empted that,... the opposite of - the first system in Coventry, where, I mean, I was seeing, as you were talking about that, at the very least, a massive opportunity, like a learning opportunity, in terms of "Happy Birthday, Dorothy!" (you didn't even know that that was a problem around your 80th birthday) how they could work with you as someone who knows those systems so well ... I think, Okay, we've really not done this very well, even if that is the outcome, even if we have to tell people that that's the system and that's how it's got to be, which is obviously very debatable, because you say there are no national guidelines, and it's obviously about saving money, I would think, but that they could have taken the opportunity to say, "Okay, if you're someone who's prepared to work with us, how could we redesign our system coming up to 80 so that that's not a bombshell, and so that you know in terms of preparing for that, understanding, understanding the science?" I think you just rocked them because you were an eighty year old turning up asking about NICE guidelines, and you know you actually knew what you were talking about and could counter. And that's, that's, that's very worrying, isn't it, that most people wouldn't have that and they'd just be dismissed and sent away. And they go home and they think, "Oh, I'm not getting my treatment any more". 

Dorothy Hall  30:40

Yeah, and that's exactly how I felt. I felt utterly dismissed. And that's when I - there were certain key instances that stay stand out as as events in my brain. And one of them was standing by the the counter in the day unit where I last received treatment, and just saying to this doctor, "Oh, I feel like I've I'm being I've left school ...,"

Gill Phillips  31:11

Yeah. 

Dorothy Hall  31:12

"Where do I go? "

Gill Phillips  31:14

A little cameo, isn't it?

Dorothy Hall  31:15

"What happens to me? Nobody, nobody. I can't come back here. I've got to do something else. And then spending a year stewing about it, trying to rationalise it, and everybody saying to me, "Oh, you ought to complain". And then me thinking that through, thinking, "Why? What? No, what is the outcome of a complaint?"

Gill Phillips  31:37

And I remember that. I mean, I remember us stewing over that and going through it, and then, you know, you became aware that  ... how obviously important it was, and how you didn't know what to do. And then you'd be talking to other friends about it. It just that takes over your life, doesn't it? Rather than, you know, you're eighty, you want to get on. We all do, to have the best life you can for the next year, the next you know, rather than spending it stewing over how to battle the system,.

Dorothy Hall  32:06

Absolutely as a as a very small addendum to all of that, I am now receiving treatment, and it's been very nicely managed. I have to say that the advanced practitioner nurse who manages the system that I'm now in is so efficient. She rings me up, she sends me my blood forms, rings me back with my blood results, and is just so easy and nice to work with. Very small addendum is the difficulty of the blood tests, which actually comes back to my early, rather convoluted point about institutionalised systems, the consultant that I saw that readmitted me back into the system, NHS said to me, would I arrange with my GP that I could do the blood test? So I thought that would be easy. I rang the GP. They said, fine. So I went along to the phlebotomist, made the appointment, explained the circumstances that it was going to a particular clinic. He said, "No problem". Then I found out that they didn't. The nurse practitioner who rang me up with my appointment said, "Oh, I haven't received your blood tests". And I said, checked on the system, but she said, "Oh, well, it's because they don't understand the way they contract with different blood analysis clinics". I'm saying this very clumsily, because I don't really understand it myself.

Gill Phillips  33:32

I think you're doing brilliantly. I think you understand a lot. 

Dorothy Hall  33:34

What I do understand is the systems don't match up. ... I'm in a different system. I'm in a system that they don't normally send the blood tests to, so they don't arrive at their destination. So it was easily solved. This, this wonderful nurse practitioner, I'm going to send her a copy of this. 

Gill Phillips  33:54

That's That's lovely!

Dorothy Hall  33:55

Yeah, she arranged for me to have blood tests at the hospital, which now treats me, so that removed all the difficulties.

Gill Phillips  34:02

So well done, you!  well done. you!, ... But it shouldn't be like that.

Dorothy Hall  34:08

It shouldn't be like that!

Gill Phillips  34:08

And it's not your only example, is it Dorothy? 

Dorothy Hall  34:11

No, no, it's not. I feel like what I don't particularly like doing, which is talking about my health issues, but I have got another condition, which is very, very definitely age related, with a different set of circumstances around and having got this opportunity, I'd like to point out how that could be ...

Gill Phillips  34:34

Life changing l

Dorothy Hall  34:35

Life changing. Yeah,  I was going to say that -  transform lives of people my age, the people that are affected are people my age, and that's age-related macular degeneration. So there are, I looked this up on the internet yesterday. There are approximately 700,000 people in the UK affected by age-related macular degeneration. And. And unlike haemochromatosis, there is a really good national support organisation, the Macular Society, which gives that maximum publicity, explains everything that's going on, and has now started to mention the treatment I'm having. 

Gill Phillips  35:18

Oh, have they? 

Dorothy Hall  35:19

Yeah. Oh, which is new. 

Gill Phillips  35:21

Oh wow! This is topical then,!

Dorothy Hall  35:22

Which is new, yes. , I was, I've actually done some research for this. 

Gill Phillips  35:25

Yes, I'm very invested in this. 

Dorothy Hall  35:27

Yes, so around about the time when I was dismissed from the NHS for my treatment, because I was 80, I was diagnosed with age-related macular degeneration, and told that there was no treatment. And anecdotally, by everybody I knew that had had it or had it now, they didn't know of any treatment for dry macular degeneration. And during the pandemic, I was - this is when this happened to me - I changed my optician. So I'd gone to a very well established High Street optician to have new glasses, and told them about the opportunity I'd got for this treatment, and they said they'd never heard of it. And not only that, they said that their optometrists had links into the local Eye Hospital, and they'd never heard of it. So then I began to look into the research behind it, and the reason I know about it is because I fortunately, and this is a kind of, it's a question of who you know ...

Gill Phillips  36:44

It's life, isn't it connections?

Dorothy Hall  36:46

It's life. It's connections. It's not because it's well publicised or information was generally available. I had a daughter who worked in the system and was the lead nurse in a hospital where a consultant specialised in macular degeneration, and I was diagnosed during the pandemic with wet macular degeneration, which which happened instantly. It's it's something that can happen very quickly. But when I was diagnosed, I saw this doctor, which my daughter arranged. He said, "Well, you've got both. You've got dry macular degeneration and wet macular degeneration", but he would treat me for both. And it was only when I came back to Coventry that and went to the opticians that I was told there was no treatment for the dry macular degeneration, but I discovered that there was so I was then thinking, oh, you know, what's the research? What? What is this treatment? Is it worth me doing it? I was going to have to pay for it. I couldn't find any local information whatsoever. All of the local clinics that advertised private treatment for eyes. None of them were talking about this treatment. Yeah, so I did my own research and found that there was research that had been done by an NHS consultant in East Anglia who linked in with a Europe-wide research that had actually found positive results in this treatment, but I'd had to do that myself. There's no national guidelines about it, no national information. And that kind of links into my my statement about the inequalities in age -elated treatments. It's now all over the internet. I looked, I looked it up on the internet before I came here. And even the the national macular degeneration society, I think that's what they're called. They are now talking about the outcome of a research project which was very positive. And they're now talking about a follow on to this, which is going to be a wider research project for more people. I think the first research project was limited number of people, and this one's going to be a much bigger research project of a much wider group of people. So this treatment is non invasive. It's looking at a sequence of lights. And it's called, I've written it down somewhere so I can say it. And it's called Photo bio modulation. Photo bio modulation is the technical term PBM for short. And the treatment is via a system called a Valeda light therapy treatment. And I started this in the pandemic. So, 2019 / 2020, and. I, coincidentally, was having my eyesight checked by high street opticians, and my eyesight has improved slightly or stayed the same through the whole process. So I've lost no sight and the last scan that I had showed an improvement at the back of my eye with the medical condition that causes you to start to lose your sight in macular degeneration. I can quote all the stuff I got off the internet, if you want me to explain it more. 

Gill Phillips  40:40

So I can say that Dorothy sitting here with a lot of notes that you've made from the internet, and you know the fact that the evidence is there, and you know you're not just coming as someone who says, "Hey, this worked for me". You've really got into it and understand it. But I don't know. I just think that what sits behind this, for me is, is eyesight. We're talking about. It's huge, isn't it? 

Dorothy Hall  41:07

It's huge. Yes, it's it is life changing. It's life changing. It's loss of being able to read. It's loss of being able to do crafts like sewing, knitting. It's loss of being able to drive so it's loss of your independence. It's the trip hazard, the fall hazard, the all of the stuff that happens to aging people that that not only spoils their quality of life, but also reduces their independence and turns you into somebody that is dependent. It's all of that. One of my concerns, and one of the reasons I've included this in what I'm talking about today, is that the consultant that I see has voiced his concern that the NHS won't take this on, because there is no cost at the moment to the NHS for dry macular degeneration,

Gill Phillips  42:08

because each person they see, they're saying there is no treatment, because

Dorothy Hall  42:11

they're saying there's no treatment. Yeah, so it would mean, and I understand how budgets are managed, it would mean new money or switching money from established other procedures. There are no procedures propping up other systems like diagnostic. I'm trying to think of the right words here in in a budget managed system, they've either got to put in new money for treatment, or they've got to move money around in existing systems and release the money from something else. Well, if there is no money to be released, because there are no systems in place to treat this, where does the money come from? 

Gill Phillips  42:56

Yeah. But when does someone step back and say, "This is people's eyesight. I wouldn't want to lose my eyesight. You know, what can we do for these people?"

Dorothy Hall  43:06

There will be costs in other parts of the system, in that there will be costs in the care system, because somebody can't manage. They manage with difficulty, and they burn themselves, or they fall over and they ... 

Dorothy Hall  43:18

Break their hip, all of all, that's kind of the attendant, ancillary add on health problems and the care system. So Taken as a whole, there probably would be health budget adjustments, and there certainly would be a huge improvement in people's life experiences. 

Dorothy Hall  43:18

Break their hip

Gill Phillips  43:42

So I'm seeing Dorothy. This is all around health inequalities, isn't it, and this episode is about age, and the same issues come up. I mean, the work I'm doing at the moment with Midlands Partnership Foundation Trust, which is about children and families, is the same issues that if you could put more money into, say, prevention for children's mental health problems, then obviously the human cost, but also the system cost of what happens when it is not addressed. In that case, young ..., and problems are managed, and early intervention, all of those things. 'Oh, no, we haven't got money for tha", but it's so short sighted in terms of ... absolutely no pun intended here, 

Dorothy Hall  44:26

Yeah, absolutely. I mean the whole issue about losing your sight when you've had sight, it changes the whole, whole meaning of your life. And I think I'm a very positive person, and I've already started to think about, how would I manage and how, what could I do? I mean, I've adjusted to things like I've got audio books on my phone and stuff like that, so I'm kind of anticipating ahead that ... but. So far this I'm not going to be negative, because this treatment has worked for me.

Gill Phillips  45:04

And like you say, if it's either maintaining or improving in certain ways, yeah. And hey, you've driven over to me today, and we're gonna go out for lunch now. And yeah, and it's fantastic. So you're such a fantastic advocate, pioneer, I think, you know, I mean, what's interesting for me is I've followed these stories, obviously, by being your friend over the years, and I've seen how you had that dip in terms of, you know, that negativity around being 80. And I mean, being 80 is a big milestone anyway, isn't it?

Gill Phillips  45:36

ven though we had your Halloween party, it was, yes,

Gill Phillips  45:36

Absolutely, e

Dorothy Hall  45:40

yeah, yes. And I think what it what, certainly the being refused treatment, what did, for me, was really face up to the fact of how society sees you at 80 most, not

Gill Phillips  45:54

everybody is reinforcing all those stereotypes. It

Dorothy Hall  45:57

is and to have it institutionalised, which is what happened with them being told their policy without any further explanation or detail, or anybody telling you what the positives might be about being refused treatment today. Yeah, yeah. So and you kind of have to recover from that. You have to recover and think you've got any value at all in order to fight back. And I don't see the complaints procedure as any kind of positive way of fighting back. So this is an opportunity to actually share with people who might have the ability to change attitudes, how people could be more valued and given more information, and for a plea for honest communication with clinicians and a recognition that people Who are well informed can make well informed decisions.

Gill Phillips  47:03

I think that's a fabulous conclusion. I was going to ask you, what do you think the kind of lemon light bulbs are from this episode? And I was thinking about, don't push people down the route to complain when they actually don't want to complain. They just want to be heard. Take opportunities like working with someone like you to, you know, to listen and to co design how a system could be, think about attitudes and stereotypes. But I think your conclusion there about honest communication, that's what runs throughout all of my work, that if people are listened to and feel heard, then it moves away from being a complaint. When sometimes at our Whose Shoes workshops, we invite complainants along, and the people running the workshops might be really, you know, that could be. And you see, like the in a positive way, the winds take now to someone's sails, all that anger because someone's listening and trying to channel it into let's make it better for the future. Yeah, and

Dorothy Hall  47:59

I, having worked in the care system, know a managed budget, I know how desperate the whole NHS system is, but I can also see how it could.... They could get better decisions by having more honesty.

Gill Phillips  48:18

So perhaps this needs to feed into the 10 year plan, which goes right back to why I set up the podcast in the first place that- I apparently.  (But I said, No, not me, the people that I know, the people like Dorothy)  that the NHS should be listening to. So let's leave it there and hope that people listen

Dorothy Hall  48:36

well. Gill, thank you for the opportunity.

Gill Phillips  48:39

Brilliant. Thanks. They will. They will.

Gill Phillips  48:46

 Thank you so much for listening. If you enjoyed this episode, it would be fantastic if you would leave a review and a rating, as well as recommending the Wild Card Whose Shoes podcast series to anyone who you think might find it interesting and please subscribe that way you get to hear when new episodes were available. I have lots more wonderful podcast guests in the pipeline, and don't forget to explore and share previous episodes so many conversations with amazing people who are courageously sharing their stories and experiences across a very wide range of topics. I tweet as Whose Shoes thank you for being on this journey with me, and let's hope that together, we can make a difference. See you next time you.