Patient Passport and Standard Information

[BLTHollyDawson]

Good Afternoon,

We are looking to create a Patient Passport for patients with long term (chronic) liver conditions, that are regularly admitted to hospital or have to go to A&E, and would like to have all their medical and personal information recorded so that they do not have to keep repeating the information, and for those who suffer from confusion and may not get all the information across that is needed.

If you have any suggestions as to what you think should be included and/ or would not mind reviewing the passport before it goes to print please do let us know!

We are also updating out ‘Standard information’ (the information about the liver in all of our publications) and we are looking for Lay reviewers to look over the information before we add it to our publications. If you feel you have a couple of hours to spare, please get in contact we me here at the Trust for more information: [e-mail]

Kind regards

Sandy Forsyth

Patient Support and Informatiion Manager

[SAMBS]

sorry I cant help as living in france and only more recently told I have cirrhosis - very confused by conflicting treatments/tests and meds.

[barclay12]

Can I help? I've recently had a liver plant

[Dorset123]

Am happy to help if I can. Have NASH Cirrhosis, but apart from aching under ribs & in back, I presently have none of the more advanced symptoms.

A section on the psychological stress of dealing with a chronic disease & pain would be very useful.

[Bolly]

Hi Sandy. my GP says they now send out a Patient Record (of medication, diagnosis, allergies etc) to "vulnerable" patients. Like a brief CarePlan. I have seen these in the homes of elderly patients. Could you base your Passport on these? The idea of these Records from the GP is so that ambulance staff take them into hospital with the patient but they can also be consulted in the home by visiting District Nurses, other doctors, health visitors etc.

[jimboriley52]

Why are the details entered into a database which can be accessed by any NHS establishment

[Bolly in reply to jimboriley52]

Jim did you mean aren't instead of are? If you did, there has been a lot of debate over this, and those against a database are against it because of data protection and their right to privacy.

[jimboriley52 in reply to Bolly]

The right to privacy should be paramount,but how much information about individuals is held on governmental databases that we don't know about. Then you also have the likes of Facebook banks,employers the list is endless. At the end of the day whatever the government etc etc want to know about you the will eventually access. Call me a cynic but Big Brother is well and truly here. And this British Government at present are absolute barstewards Nazi even if the could get away with disposing of all ill,disabled people as a cost cutting exercise to make there "Friends" richer they would do so. Afterall the only time the general population are any use to them is at General Elections and Wars as cannon fodder

[findasolution]

Hello Sandy,

It sounds like a good idea but confess to being a little confused about what is actually being proposed. To be in a position to offer the comment you have called for and for it to be meaningful it seems sensible to first ask what is actually meant and or envisaged by 'a Patient Passport'?

The reference to 'passport' conjures up visions of an official type document that is issued by someone who has some kind of vested official authority. Therefore is it proposed that the document be one that is issued by a relevant official of the NHS or a Hospital Trust or Liver Transplant unit etc who will also be responsible for the entering and updating of the information and detail it contains and that it shall be carried on the person of the patient whenever he or she attends a consultation or visits a hospital? In other words will it be a reflection or summary of the patient's liver disease history that has been extracted from the computorised records that some doctors are networked into? If so then how supportive and co-operative can we expect those officials to be bearing in mind the constant complaining we often hear about doctors and clinicians etc having to waste their time with the completion of forms and tick boxes etc?

If on the other hand the Patient Passport is intended to be some kind of personal log book and or diary or patient toolkit that the individual completes and updates then it is possible it may lead to far more concerns than benefits if it is to be relied on by others and in particular if the recorded information is inaccurate in some way. Not everyone has the same understanding of a particular procedure or indeed the reason for it and will describe it in divers ways. Furthermore it also seems to be the case that some doctors are not always forthcoming with information and or reasons for their decisions and in many cases it can be difficult to get them to divulge and discuss the relevance if any of such routine things such as the enzyme level readings following LFT's or the full details of scans etc. To have to telephone a surgery and or consultants secretary to ascertain results and then be told ,sometime reluctantly by the person at the other end of the phone line that the doctor has indicated the test and or scan was 'satisfactory' is pretty meaningless. Satisfactory to one person may mean something completely different to another and what meaning would it convey if entered verbatim by the individual in his or her passport?. So if is intended the passport document will be something within those sort of parameters then the accuracy and reliability of it would be open to question and furthermore how much weight will a doctor or hospital that is not the one normally attended by the patient attach to it?

I do already have a copy of a Division of Gastroenterology and Hepatology, "Liver Cirrhosis: A Toolkit for Patients" which was published by one of the USA Health Systems and I am confident that there are also others on this forum that also have a copy. A note on the document says the Toolkit should be taken to every appointment. It contains pages for the entry of details such as My Healthcare team, Current medication list, My appointment planner,Weight log and schedule of bloodwork . However that toolkit is also something that the individual patient completes him or her self and in my view it serves little purpose other than as a memory jogger.

Apologies if my query seem a little naive but In my personal view there are imponderables and uncertainties about what is intended. Therefore I ask whether it is possible for you to elaborate on the thinking on which the proposal is based as well as the intended purpose and status of the proposed Patients Passport?

Many thanks.

Regards