How to access right medical help for DM

[UltimateFoole]

My DM is in her 80s and lives at home with my DF.

Last year the frailty clinic said she was underweight. She is now suffering from diarrhoea and is losing more weight and getting very weak. She had to drag herself back to bed from the bathroom recently.

I have discussed her diarrheoa / lack of control twice with the GP surgery. They've done 2 home visits and have prescribed Senna - thinking DM may be constipated and the toileting accidents are faecal leakage around the impacted stool.

But now she is taking the Senna and her stools are liquid. I live the other end of the country but the carer says DM is now like a skeleton.

The GP has seen DM but there's no follow up and the care just doesn't seem joined up. It's like every visit is a discrete event and the symptoms are treated - but the wider impact of weight loss isn't considered.

*DPs have been flagged as vulnerable patients to the GP - but they are never called for check ups of any kind.

*Doctors say they will prescribe - but then the new drug doesn't show up on the prescription.

*I asked for a review of medications - to see if some drugs were impacting bowels - heard nothing back.

*DM has some cognitive decline and had a stroke. She forgets details of her medical history and somehow the GP doesn't check the records to find out. So for years DM has had an open referral to the dermatologist for lupus. But when she went to GP with a rash it took months to re-diagnose lupus all over again.

It's so frustrating.

Is this GP surgery particularly disengaged? Or is the NHS not at all joined up?

Anyway - how do I now get some care for DM to manage her diarrhoea and dangerous weight loss?

Ok. Do you know what her BMI is ?

Also, how often is she having care? Is the carer fortifying her food?

Ask the GP if they are willing to prescribe fortisip also to carry out a medication review.

I think it's likely a mixture of a number of things. Generally with GP surgeries things don't happen unless they are chased. Eg the new medication is added to the list but a prescription isn't automatically issued. Then as the pharmacy doesn't know it exists they can't request it so a prescription doesn't get produced. Some GP surgeries are better at this than others.

Is there anyone to go to the GP appointments with your mum? Often once at the GP some people can actually downplay what is up with them. My own experience when my dad visited the GP complaining of leg pain when he had been quite ill in bed for a number of days. He had quite a serious infection that the GP sent him to hospital for. I'm not saying this is the case with your mum but it may be that she isn't getting across the correct reason for the appointment. I think if possible someone either a neighbour or friend could help explain the issue if you re not able to be there and do so.

The carer comes in each morning to do breakfast + meds and leaves sandwiches etc for lunch.

The food is not fortified. But DM has been prescribed a fortifying drink - could that be Fortisip? She hates it and doesn't often drink it. She will performatively drink it when I am there.

I don't know her BMI - but she is definitely below 7 stone. When I last saw her in October she was skin and bone. Worse since then.

Ask for something different, there are creme desserts, various different flavours and brands of drinks that are all slightly different tasting. Some milkshake based, some more like fruit juice. Some designed to be taken as a small shot rather than a full drink.

@DeathMetalMum - the carer goes to appointments with her and is good at speaking up. And yes - you are spot on that DM downplays / denies any problems.

The last 2 times it has been house calls. For the 2nd house call I pre-warned the GP about the symptoms and history. I spoke to the surgery just now and apparently there was a follow-up phone appointment - goodness knows what DM told them.

"Generally with GP surgeries things don't happen unless they are chased. Eg the new medication is added to the list but a prescription isn't automatically issued. Then as the pharmacy doesn't know it exists they can't request it so a prescription doesn't get produced. Some GP surgeries are better at this than others."

^^This is happening. Communication is tough between GP/ DM/ carer/ me. And then DM says whatever she thinks will make people leave her alone.

she needs a full set of blood tests for the unexplained weight loss

a stool test for the diarrhoea

something like an infection or low iron or both is a possibility

the GP does sound unengaged

is there a way someone can accompany her or talk with her on a phone appointment? It flags up for more attention

can you ask the frailty clinic to ask the GP?

prescribing senna sounds based on a mad assumption. I'm wondering how they decided that.

Has she had any investigation of the weight loss? Treatment may be limited given her other health problems but at least you would know where you stand.

Diarrhoea plus unintended weight loss should trigger thoughts of a 2WW referral, or at least a discussion of how far you and your mum want to go with this.

"...prescribing senna sounds based on a mad assumption. I'm wondering how they decided that." @EmeraldRoulette- Maybe because it is the easiest, lowest-effort thing to do. 😟

DM had full bloods done not too long since.

She was in hospital in September after her stroke - would they have done bloods then?

GP did arrange for a stool test and we are now waiting on results.

What is 2WW? Will go and look it up.

I just remembered that DM is also being seen by Occupational Therapy team following her stroke. Might it be worth speaking to them?

Asking the frailty clinic to follow up with the GP is a good idea.

They will have done bloods in September yes, or they should have

but they need to do them again. She clearly has a bowel issue and they can find out all sorts from blood tests.

is it possible they asked her and she refused? But it's good she has had a stool test.

also, are you sure she saw a doctor and not a Physician Associate? The senna thing requires an acrobatic stretch or a big misunderstanding. Or perhaps she answered a question wrongly. Is she able to advocate for herself?

OT don't have a medical remit so I don't think they can help.

My Dad had very similar symptoms OP and it turned out to be bile acid malabsorption. https://gutscharity.org.uk/advice-and-information/conditions/bile-acid-diarrhoea/

He was losing weight at a rate of knots, and generally unwell with it. Turned out that his was a result of liver cancer - not saying that to scare you but she does need seeing and referring quickly to rule that out. I used to email Dad's surgery with requests - it did seem to prompt some action eventually.

A GP rang me back and will visit DM tomorrow probably -depending how bad she is.

DM is being sent for a CT scan and they will wait for stool sample results.

GP confirmed that blood work was done in hospital in September and nothing new/ sinister. I will email them to ask for full bloods again.

I was able to ask for Fortisip in a different form and flavour - so thank you for that. Coffee flavour - which is good as she loves coffee.

I guess it's a case of keeping on top of the GP surgery. I think emailing them is a good suggestion as it's easier to keep track of and I can do follow up emails after phone calls.

I wouldn't say DM's weight loss is sudden. More that she was eating little and was underweight for a while. Then we addressed that with daily carer visits. Now the bowel issues mean she's not getting enough sustenance.

However, DM's family are very committed to dying from cancer so it wouldn't be a huge surprise. Her health is pretty bad nowadays and she's been miserable for ages. I mostly just want her to be comfortable whatever happens.

Oh - @EmeraldRoulette The 1st visit was with a paramedic (? that's what the GP receptionist said).

I was confused because I thought they said it would be a GP home visit even though outsourced to another company. Following this visit DM's surgery was unable to see what had been diagnosed or prescribed. Just not good.

2nd time one of the GP's from DM's surgery came out to see her.

Change in bowel habit and weight loss, she probably should have triggered a 2 week wait referral. Could be bowel cancer, don't mean to sound like a doom monger sorry. Anyway hopefully the CT scan will provide some answers.

Prescribing senna was ridiculous.