GP says I have no entitlement to have anything 'extra'

[lockedonyou]

I've had so much going on it's just been so hard, I know it's no excuse.

I went to my Gp today to discuss a dietician referral. I have Asperger's (unknown to anyone apart from my mum), and I'm not great with making food, I struggle - plus I am a picky eater.

Anyway, I was hoping to see a dietician for advice and maybe ways I hadn't thought of for healthier eating

In 7 months, I've gone from a Size 10 to a Size 16. I look so big. I looked in the mirror last week, and saw I have no waist anymore I felt fine really until that moment. I knew I put on quite a bit but didn't think it was that bad

GP listened to me and then said 'you know Polly, you aren't entitled to extras. I know that's hard to hear. It must be very difficult caring full time on no sleep. And I suppose that makes you feel like you deserve something else'

He told me to come back in 6 weeks if his suggestions of simple meal prep etc don't work. I didn't know what to say, I felt so sad

I lost my baby son recently, coupled with caring for my disabled DC 24/7 and providing all the care. It's so tough. I know it's no excuse but was it really necessary to phrase it like this?

There are some people who like a friendly warm empathetic GP and some who prefer a direct approach. I'm in the latter group. No matter how it's gussied up it's still the same message. Better to open a plain brown paper parcel with no expectation than be given a fancy box with pink tissue but no wonderful exciting content.

Neuro spicy Mum to 2 asd young adults who would be described as picky eaters.
I would write a comprehensive list of things you are able to eat.
Then I would work out your calorie intake via a website.
Get a notepad and have a double page a week write everything that goes in your mouth down
Create plates of food from your approved food lists (you dont have to cook) but stick to portion sizes listed on the packets and record those calories.
Stay within your calories.
If it's easier work out a menu that you can have the same every week.
If you have trouble remembering to eat do it at set intervals every day.
Eg after dc breakfast then i have to eat.

Also check out your local adult autism services. They might be able to help you navigate this in some way. Its usually called something like (area name) adult autism services

He wasn’t telling her she wasn’t entitled to free food? He was telling her that she wasn’t entitled to ‘extras’, as in extra food. He did phrase it very poorly though.

I’m so sorry for your loss, OP. I can’t imagine the stress you must be under. Did the GP know about your Asperger’s?

To say you’re not entitled to extra food is even weirder. I thought he meant you’re not entitled to extra NHS services , which is bad enough. ( who is entitled?)
Is it any use contacting the Autism Society www.autism.org.uk/advice-and-guidance/what-is-autism/asperger-syndrome. Maybe they have dieticians or diet advice that would be more accessible for you?

OP doesn't "believe" she has ASD. She stated she has it. So let's take her at face value and assume she has been given a diagnosis, instead if insinuating she's making it up. If the diagnosis she was given was "Asperger's" it's reasonable for her to use that word when describing her condition.

I think that's a bit harsh given the circumstances. How you talk to patients matters and can really impact them

Hi OP.
I am an NHS dietitian. I don’t think the doctor was right to speak to you like that. Unfortunately, dietetic services (like most) are extremely stretched at the moment. If you did get an NHS referral, it would be triaged as very low priority. Unfortunately you would extremely lucky in my area if you were seen within 52 weeks.
There is a lot of information available online (and on here). Not a lot of it is evidenced based. If you are looking for advice please ensure it is endorsed by the NHS or preferably the British Dietetic Association.

There’s dietary advice absolutely everywhere on the Internet.

At the end of the day, do you need to visit the GP for advice on your weight gain? You know you are 'a picky eater' but as an adult you are capable of making food you like. Your belief you have ASD (Asperger's isn't used anymore) is not a reason not to eat well.

I don't believe I have Asperger's. I have Asperger's as a diagnosis from 2009 Never been told by a health professional not to use it, and personally think saying I'm autistic is a bit daft since my son is autistic, doubly incontinent, can't speak or communicate, and has a whole manner of severe problems as a result of his autism that mean his functioning is of a baby of 0-12 months. So I've never used it

Anyway

Why are you phrasing 'picky eater' like that?

My son is profoundly autistic and has ARFID. Locum GP sounds like a very strange and rude man, but he’s sort of correct. He is presumably implying that you just need to eat less and (harsh as it is) you do. I’ve been a size 8 and a size 16 and everything in between so I absolutely get it. DH is a doctor and is equally strict with his patients who gain weight on steroids - telling them “it’s not an excuse”. Some are unhappy, others thank him for warning them to eat like a sparrow!

FWIW the specialist services for eating disorders related to ASC are sparse at best and utter shite at worst. ARFID is new and has few specialists, those there are seem to be rather snake oil-ish to me. I’ve been desperate enough to try one privately for DS and it was pretty much a rehash of everything on the NHS website that we’d already tried.

So in terms of dietetic referral, you’re not missing much.

I am sorry OP because it’s a horrible situation, but I don’t think there is any higher expertise that will change the fundamentals.

PS whichever PP said “neuro spicy” - I bloody love it and I am nicking it with pride!

Don't know if it's still happening but GP's were being paid to NOT refer people. If they can avoid it/delay it they often will. Just go back in 6 weeks and say it hasn't worked and you still want a referral. Keep going back till you get one - but make sure it's someone who can help people with ASD (not sure if all dieticians would be able to??).

This

I’m sorry for your loss, and how difficult it must be to grieve, whilst being a carer for your remaining child.

I’m really sorry that a GP is now so far removed from doing his job that he thinks that is the way to speak to someone.

I think you should definitely try and speak to someone else in the practice and keep trying to get someone to help you. You sound like you just need a helping hand right now (or a little kindness).

Do you have someone who could attend another GP appointment with you? Someone you’d be comfortable with hearing what you need to say but who could also advocate for you if needed? Maybe something for you to consider.

Oh that's awful! My situation isn't 'serious' but really? Potentially very serious issues going undetected and GPS being paid for not referring? Surely that opens up a huge can of worms for negligence somewhere if someone were to become unwell or die?

That's awful .
I had thought he meant extra service from the NHS.
Your problem may be stress and distress, not simply food and preparation.

Sorry mistakely wrote just 'This' Was agreeing with another poster about the courage of your post OP

@HinchcliffeandMurgatroyd

*She hasn't got learning difficulties, she’s autistic.

If she’s feeling overwhelmed, I will take a guess that video recipes would feel like even more “noise”.*

I wasn't saying op had ld (although that could be comorbid with ASD), just that some with nd find visual and aural instructions easier to process than written, and can pause/replay as required. Op, can you ask your surgery if they have access to Wellbeing services who can provide a more holistic approach, including dietary advice and support to manage weight, one to one.

Please fuck off with telling people they can't have Aspergers syndrome. My son was diagnosed with it 6 years ago. They might not use the term any more but there's no good reason for that IMO and his diagnosis still stands. I hope you don't have a child with ASD as you don't seem to understand the difficulties some people have with food at all. Also GP's often help people with issues with food, are you really suggesting people with bulimia, anorexia, AFRID or obesity don't belong at the doctors?

Was he suggesting that you are 'comfort eating' because of the stresses in your life?

There’s only so much a GP/ dietician can do surely? I don’t mean to be horrible but I feel like everyone knows what’s they should be eating and how much. You might be better off getting a personal trainer or joining a local gym as they can help you massively with meal plans and macros.

There’s SO much stuff on Youtube as well and so many approaches you can take regarding times actual calories you need (rarely have I ever met a girl who needs 2,000 calories) MyFitness Pal is free too just make sure the portions you’re putting in are correct as it’s so easy to overestimate xxx

I think it was a good idea for you to seek help from your GP about this. With your restricted food intake and such a sudden weight gain I’m very surprised he didn’t take you more seriously. His wording was extremely odd, and almost as though he completely forgot you have Asperger’s and it’s not just ‘fussy eating’. A dietitian would have been a great idea so I’ve no idea what his problem was.

I feel for you, but I have to have this conversation in my head all the time

I say 'you dont need this, you're not in need of extra food'

It doesnt always work unfortunately but that is the fact of it

A personal trainer? A local gym? I don't have time. I sleep when my son is at respite care (10 hours a week, spread over 3 days), and that's it. He doesn't really sleep otherwise. I can't exercise on no sleep (but I do a lot of that anyway running constantly after him, etc)

I guess what you wanted (and need) is not a GP, nor a dietician either, but someone in authority to understand that you are in need of understanding and kindness. Not someone with a list of remedies to change your eating, but someone to say maybe that life can change, and get better, and then you will get better too. I am so sorry for your loss, and for your very difficult days. I had a neighbour with a teenage son who sounds very similar to yours (although obviously older). They must have had a very supportive help package- he was only home at weekends and there was a lift for him in the house, and a van with a ramp for his wheelchair.
I suppose it made life possible for them. I really hope you can get similar support.

Make a complaint and ask to speaK to a different GP. You are absolutely in the right to ask for a referral to a dietician to manage your weight in light of your Aspergers.
You are not asking for anything extra.
you are making a reasonable request for a referral to proactively manage your health in a preventive way.

this GP needs to learn to treat patients with respect and not in a condescending way.

unfortunately I’ve learnt that kicking doors down is sometimes the only way to get what you need, deserve and should get without having to kick doors down.