Can anyone advise what to do when the GP is saying that primary care has reached its limits?
The Patient is housebound now and needing carers to assist with meal prep and undertake daily personal care. Eight months ago patient was unwell but able to lead a life and undertake self care. Patient does have B12D and self injects.
There has been NO diagnosis of cause or any evidence of a care plan and up to now Patient has been pushing GPs to do tests ( some done and some not) .
Patient appears to have been abandoned. What can she do? Any advice is very welcome. Thank you in advance.
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Sorry to read. Unfortunately, this is 2 systems. One is the Medical system in this case, primary care and it is generally, the Local Authority (council) that provide carers for meal preparation, washing, dressing. Although, private care firms also do this too.
Now Social Services (Local Authority) would have a Plan of Care, they would have assessed needs. From a Medical point of view, if the GP is saying that primary care has reached its limits then I am inclined to believe them. The NHS has been at breaking point for years for many reasons.
1) We have an aging population with an extra 3 million people who are deemed as Frail.
2) We had COVID-19.
3) Nurses, consultants, junior doctors, ambulance drivers all went on strike because of pay and working conditions.
Write a letter to PALS. It is December and this is when the ‘winter viruses’ come and because of bad weather more road Traffic Collisions and Falls.
Subject Access Request under the Freedom of Information Act (2000) and standard letter on Information Commissioner’s Office to obtain hard copies of person’s notes.
The print out of the blood result showing the time, date and number in mg/l is the diagnosis of P.A./B12D.
The treatment is if loading doses occurred and the 2 weeks when it happened.
The management is every to 2 - 3 months. However, person self-injects so is proactive and has autonomy.
What is the role of a General Practitioner ?
My Head of Midwifery once had a letter of complaint against me, I was called to their office. I thanked them and asked were they going to reply to it. The general public have very strange ideas of what they very wrongly believe Clinicians can do. We also must stick to our Role and Scope. If we do not then our Governing Bodies can haul us over the coals, we can receive disciplinary action or be dismissed.
The letter of complaint I laughed at and it went in the bin. There are some conditions/illnesses/diseases that just have to be managed. We do not always have answers and it is about the patient accepting that. It is never black and white. People often do not look at the bigger picture.
I told my lovely nurse that I SI and I would not be coming to see her any more. My appointment could go to someone else. It was in an attempt to save the NHS. The firm diagnosis is printed out on a piece of paper in my home. How many others have this mind set on here ? People SI but keep their 3 monthly appointment - why ? Just food for thought.
If additional support is needed then the recommendation would be to contact social services and ask for an evaluation of the system. Although NHS and Social services are supposed to work together the process doesn't run very smoothly and probably doesn't run at all at the GP level. Its a bit better with hospitals - particularly if occupation therapists/physios are involved - but even then it can be hit and miss, and sometimes social services can be a bit hit and miss themselves.
Have other autoimmune conditions been ruled out? Hypothyroidism etc? Common to have multiple AI. Also how are ferritin, folate and Vit D ? These can be tested privately. Optimal results aren’t necessarily mid range with these and make a huge difference for me. I need D over 100, ferritin around 100 for example 🌱
It is a case of too many people coming into the country, not enough Gps and no expansion in services to accommodate the influx of imigration. The NHS is at breaking point through the pressure. Both Drs and consultants no longer work a full week which is causing even more pressure to the point patients are no longer getting adequate care.
Personally I believe an outline medical plan is necessary for anyone with complex medical needs but my GPs are reluctant to commit to any course of action and, despite years of asking, won't provide me with a plan. The situation seems worse nowadays after Covid with all the NHS shortages. I have written my own plan and given it to a GP but later it gets overlooked when it's needed.
Is this family, friend or client?I found the charity Carer Support amazing for my sanity as my late Mum deteriorated. Age UK are good for advice and visits too, to help the patient make choices.
So you have to engage with social services (overstretched and frankly useless, but certain things don't kick in without them). The GP should be offering their incontinence nurse/district nurse to help and pads etc. can be provided on prescription if needed. Special bin needed from local council. Occupational health can get fixtures and fittings for the house, grab rails, hospital type bed. Things like a riser recliner chair we had to get ourselves. 2nd hand are available through some charity furniture shops.
Online shops are great for absorbent furniture protection and lots of other handy products.
Level access bathing a must for long term home care.
Actual care visits need to be organised privately and claims made for attendance allowance through benefits system. Any savings will be used and assets up to a certain point. Getting regular good carers is a struggle. Ask around for recommendations. My mum hated the thought of a nursing home, we ended up with 24hr care at home from a national company. She still ended up in hospital. Once she was in a nursing home the nurses could control medication 24hrs. Choose a nursing home, if it comes to it, that offer end of life care.
The system is based on the individual and family taking control and responsibility, which is fine if there are good family relationships. The patient has autonomy to make their own decisions and organise/refuse their own care until the GP and Social services say they can't, or when the patient allows powers of attorney to be enabled.
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