Feedback Please: is there always 'a Main Family Carer ?'

mike stone 20/11/15 Dignity Champions forum

The title is a slight distortion, of the question I would like feedback for.

There is a system being developed across England, called 'EPaCCS', and EPaCCS is an on-line electronic database containing details of patients whose GP thinks will probably die within a year. The idea, is that people such as 999 paramedics and A&E doctors, will be able to quickly find important information, by looking at EPaCCS for the patient.

All of the 'lay carers' - family, friends - who are caring for the patient, are described as 'carers' in the EPaCCS guidance (nurses, etc, are not described as 'carers' by EPaCCS).

I am debating with the people who publish the national overall guidance about these EPaCCS at the moment (they will all be created locally, but in line with this national guidance) about various things, and one thing is that at the moment, the guidance REQUIRES the identification of 'a main carer'. This NOT optional - the guidance says that if the patient or the carers fail to identify 'a main carer', then a senior clinician will 'identify' (and record within EPaCCS) a main carer.

The questions are (I'll pose the questions first, then move on to the pros and cons):


WHO SHOULD DECIDE IF THERE IS A 'MAIN CARER' - should the patient and family decide, or should the professionals decide ?

My original argument against this 'main carer' was:

Imagine that I am an 85 year old widower, who has got three adult daughters, all of whom are involved to a similar extent in supporting me - WHY ON EARTH, would I be willing to accept that one of my daughters could be described as 'my main informal carer' ?! Why would I be willing to have one of my three, equally loving, involved and caring, daughters, called 'the MAIN carer' ? And if I were one of these daughters, why wouldn't I reasonably expect the NHS to DIRECTLY keep all three of us, updated about anything important that we needed to know ?

SURELY, IN A PATIENT-CENTRED SYSTEM (as the NHS claims to be) IF A PATIENT AND HIS CARERS SAY 'there isn't a 'main' carer - you will have to list three of us as ALL being 'main carers'', THEN THAT HAS TO HAPPEN !


The EPaCCS people replied with:

'You have raised concern that the information standard requires EPaCCS systems to identify the 'main carer'. You highlight that people may have more than one carer, for example three daughters, and you consider that there should not be a hierarchy to identify one.

We agree with you that in many cases, individuals will have more than one carer and would want all to be involved in their care and in decision making. The information standard currently has provision to record the name and contact details for one carer that has been nominated to be the first point of contact. This does not imply that there are no other carers nor that carers should not be equally involved. However, it means that staff have a single point of contact with a family member to expedite communication through them and reduce the time for staff to contact multiple family members. An example of the communication required could be that the patient has taken a turn for the worse and staff want to inform the family.

However, we understand your view point and I have formally raised this an issue to be considered by the Clinical and Professional Advisory Group for the information standard.


I replied with:

I worry that this 'single point of contact' could have the opposite effect, because junior staff in particular, seem to 'guard information'. I am bothered that a father might be dying in hospital, one of his 4 children might be named as your 'main carer', she might not be the person who answers the phone and you can end up with 'I (and my siblings) wasn't with my dad when he died, because I was out when the hospital phoned, my friend answered the phone, and the hospital did not tell him 'well, her dad is dying, so if she wants to visit while he is still alive, she needs to come quickly''.

As for 'putting this simply', I have no objection to all of the 'close carers' being listed as 'must be contacted' and for the professionals to ASK THE FIRST TO ANSWER 'can you tell the others ?'. If the first carer contacted says 'no problem, I'll tell everyone else' then fine - but if the answer is 'no, I can't easily do that' then the professionals should contact all of the carers/family who need to know.


If I can get feedback about this - is requiring that one of the family or friends of the patient appears within NHS records as 'the MAIN carer' an unreasonable imposition of a sort of structure and hierarchy which isn't necessarily present within families, and is it potentially more problematic than helpful in terms of professional-lay communication ? - then I will send the responses to the EPaCCS group.

Although, I struggle to see how my suggestion can be wrong:

'I have no objection to ALL of the 'close carers' being listed as 'must be contacted' and for the professionals to ASK THE FIRST TO ANSWER 'can you tell the others ?'. If the first carer contacted says 'no problem, I'll tell everyone else' then fine - but if the answer is 'no, I can't easily do that' then the professionals should contact all of the carers/family who need to know.'

There is, to my eyes, a lot of this 'trying to impose things which come naturally to systems and professionals, onto patients, families and friends, during end-of-life', within current 'NHS beliefs and behaviours' - and I don't like it, one little bit. it might make life simpler for the system/professionals, but it often makes it harder and less satisfactory for the laymen involved.

Post a reply

Gill Cree 21/11/15

I agree totally.  Despite the provisions of the new Care Act my recent experience of the NHS treating an end of life elderly person has been appalling.  The 'system ' still serves to dehumanise these  individuals and this reflects in the overall lack of person centered holistic care.  Forcing people to name only one main carer to accommodate an inadequate system further reinforces the culture of failing to see the patient as an individual with individual needs but rather as a unit to be fitted into the hospital  system.

Vicki Hon 23/11/15

Surely it should be next of kin not main carer anyway... A carer could be a relative who happens to live near the person but they aren't necessarily the next of kin for decision making. A new boyfriend at college could be the main carer but the next of kin are the 18 year old's parents...

mike stone 06/12/15

A day or two after posting this question on DIC, I searched the internet for organisations with 'carer' in their title, and sent the question to some of those.

A few sent back 'I've forwarded the question to the relevant people [in our organisation].

Two came back with what amounts to 'we don't express opinions on that type of issue'.

But at least one person, at one carers organisation, sees what I'm getting at:

'Dear Mike

Thanks for getting in touch about this.

We can see why this would bother you - wanting more than one of your family members, or carers, to be listed as the "main carer"; as well as health and social care staff contacting more than one carer when it isn't appropriate or possible for the "main carer" to contact other carers.

I've asked external colleagues who work in the end of life sector to get back to me with their thoughts on this, and I will let you have these when I do. I'll ask some external NHS colleagues about this too.

Thanks again for getting in touch, and we'll get back to you as soon as we can.

Best wishes'

mike stone 09/12/15

I have received the following response from Age UK, and I asked if I could post it here [in full with no editing] after removing the name of the person who sent the e-mail: the answer was yes, so here is that response:

Dear Mr Stone

Thank you for your email. I am sorry that we have not responded sooner. I had been in touch with the relevant team and they have now come back with some information

Age UK works across a wide ranges of issues, including the care of older people in hospital at the end of life. There are a number of well-known problems in how such care is delivered, such as poor training and understanding in end of life care amongst staff; poor communication on sensitive issues, particularly in the last hours and days of life; and often a complete lack of planning, which could help people have as good experience as possible and to have choice over where they die.

The issue you raise around nominating a "main carer" speaks to many of these issues, particularly the point you make around person-centred care where staff should be taking full account of someone's individual needs and circumstances. In this respect, there should always be scope to have a number of people nominated as a carer where this is right for the individual. However, I can understand in a busy hospital environment, it could be difficult to communicate with multiple people or to engage family on certain decisions (for example if somebody loses consciousness or is not physically able to make a decision on an aspect of their treatment). This can be particularly problematic where there may be disagreements between different family members.

This all speaks to the importance of talking to older people, their families and their carers about their needs at the end of life. People can often find they are not supported to discuss and plan for this stage of life, including in identifying and recording in medical notes those people that are important to the person being cared for. National guidance can help professionals to achieve some of this in line with best practice and in this regard, we would support approaches such as EPaCCs. However, this should never take away the human element of health professionals caring for people and much more needs to be done to ensure all end of life care is consistently at a high standard.

We really appreciate you taking the time to contact us and thank you for your interest in the valuable work of Age UK.

We're Age UK and our vision is a world where everyone can love later life. We believe that living longer should be celebrated and everything we do is designed to change the way we age for the better and enable everyone to be part of the solution. Together, we can help everyone make the most of later life.

That's why Age UK is here. We stand up and speak for all those who have reached later life, and also protect the long-term interests of future generations. We believe that living longer should be celebrated and everything we do is designed to change the way we age for the better and enable everyone to be part of the solution.

Together, we can create a world where everyone can love later life.

Yours sincerely

Old forum user 09/12/15

Dear Mike,

Sometimes things can get a bit greyish.

I've noticed several spouses who are the main carers, that have absolutely
no clue about health and safety, moving and handling etc, become most
irritated with their loved ones because they, as the carer, have had enough,
and the loved one is now becoming a nuisance. They see the loved one as a
duty, and not as care anymore.
I've walked into a house and found both the loved one and the main carer on
the bottom of the stairs, due to dragging, and falling. There were no
electric chairs for the loved one to go up and down the staircase, and she
was too heavy for the husband. He had had no training on how to support and
encourage with zimmer frames. Washing and changing her was a pain. He had
rebelled and wanted to "live again" by going out, and leaving her alone in
the house. No fluids, no support.

There are other cases where people are absolute gems in looking after their
families, but they still require support. They do get tired physically and
emotionally, and require group sessions which I know they no go to, just to
get out and go have a cup of tea and some fellowship with friends. The one
they are caring for must also see that the main carer can also come and go
as he/she wishes, and isn't a butler on 24/7 duty. I have seen rage set in,
shouting back at the loved ones, due to this.

We must always remember that even though we love our families, when total
reliance sets in, the other person's life does gets affected. How will that
main carer respond?


Old forum user 10/12/15

My wife only recently took on the responsbility of main carer for her mum in her mid nineties,due to this it has caused alot of financial hardship.On top of that my wife was left with little support as other relatives hunned their duties as children.I found out that social services expected my wife to wash, dreess and care her mum without the proper support.They even said that her mum could not come home unless more care support was paid for.But with little or no finances the bill for help got worse.My wife now has to cope her mothers death and the financial costs involved such as cremation etc.Society as I know does not support carers who look after elderly relatives or people with disabled family members.I think there is too much red tape and people screwing the system for money which could be given to help carers directly. regards Robert Farrier public member for Newarl hospital SFHT and Dignity Council.

mike stone 10/12/15

Hi Vicki and Sally-Ann,

You both raised points which I would like to discuss, but I will do that [properly] much later - I don't want to 'divert the flow' at the moment. But I will point out, that Sally-Ann did not seem to me to be discussing 'grey areas': surely she was pointing out 'known differences' whereas I see 'grey' as the unknown bits ?

For example, if a patient has collapsed, and a family carer calls 999, the 999 staff have had no prior involvement with the carer (unlike Sally-Ann's examples): so, should the 999 staff believe what the carer tells them, or should 999 staff 'default to doubting the carer's integrity' ? It has to be one or the other - you can't 'partly believe' people in such a situation, you either default to trusting carers, or default to not trusting carers. And all 999 staff should be behaving the same - otherwise, 'it is all subjective'.

Hi Robert, I feel sure that the problems your wife and you have had, are not uncommon - a lot of it comes down to money, and social services are (unless I'm mistaken) being squeezed ever more tightly, so I fear the situation might actually get worse. It is bad enough, when someone you love dies - if you add-in 'and the people I thought were there to help me, were really not helping' it makes it even worse,

Best wishes, Mike

Vicki Hon 11/12/15

It's very complicated. My husband (who had no real care experience) was my main carer. I have had to teach him how to hoist me, and we fumble along when I need changing or help. My main carers who are paid are provided by the council and direct payments to provide 'professional care' for years my husband and I refused to let my husband provide me with care because he couldn't do it, he didn't have the skill set 'to care' he cared immensely but he wasn't someone who would naturally be a carer.. Ask him anything to do with music or computers and he can fix it straight away.. A continence pad totally confuses him every time..

He will make phone calls. But if ambulance crew are dependant on him for information about how to care for me you may as well ask the local wild cat. There really needs to be a system where by a persons care plan from social services or the private sector travels with patients into the hospital so that there is a base line to start from.. Yes the person may have deteriorated further but if we know they can't normally weight bare then the nurses and Physio aren't going to expect them to do it.. If they normally need feeding then the hospital will know this. So they can aim to rehab people to what they are capable off..

Personally I think it should be.. Next of kin are asked but also care plans are transferred between social services and the NHS so we get continuity of care...

mike stone 11/12/15

Can we move the potentially very interesting discussions about 'carers' which are not directly answering my original question, to my new post please:

Can we please save this one, for 'Should it be up to the patient, or if the patient isn't capable the family carers themselves, to decide if a 'main [family] carer' should be identified within EPaCCS'.

mike stone 11/04/16

I've just had a reply by e-mail:

Dear Mike,

My colleague passed on your email to me before Christmas. Please accept my apologies for the lengthy delay in providing you with an answer to your question. I have now had the opportunity to look at this is in some detail and consult with colleagues working in End of Life care. We would take the view that it is positive that the EPaCCS core specs require the identification of a Carer as half the battle we often have is to get medical professionals / statutory agencies supporting a person with health and care needs to recognise and respond to a carer's needs. However, the EPaCCS specs do seem overly prescriptive as there may not be a carer or the friends / family involved or the person with a life limiting condition may not accept that label and this should be respected in our view. We would take the same view as Age UK in respect of the 'main carer' issue, supporting the principles of person-centred care but also balancing that against the realism of a busy hospital / medical environment in which practitioners would seldom have the time to communicate with multiple family members. Having been a carer myself for 12 years and spent a lot of time within the hospital environment, I could foresee a number of potential issues caused by communicating with multiple family members - one primary contact does make sense but it is incumbent upon the NHS trust to ensure that position (person ? - added by Mike to the e-mail) is in a position to communicate with any other family members and this was accepted by both the patient and their carers / family. We often find even when there is '4 daughters' , one is usually a primary carer (not always but more often the case).

Recording both primary and secondary carer might serve as a compromise situation; the secondary carer could be contacted in the event that the primary carer was not available. Generally we are supportive of the principle of making mandatory to record a carer's details where this one but believe the execution of this policy to be overly rigid and detracting from what they were trying to achieve.

I hope that makes sense.

With kind regards,


Carers Agency Partnership Manager

Old forum user 12/04/16

The specifications should be optional

Sarah Mancini 12/04/16

Very interesting points and it might be that the main care provider, whether family or professaional might not want/ be appropriate to be the first contact as well. There are many different ways of looking at this and associated emotions.
From an administration point of view it is clear information needs to be communicated effectively and in a timely manner, to an appropriate person,on a need to know basis. If communication isn't effect the implications can be significant.
I wonder therefore, if a simple change of wording, to something like; first point(s) of contact, might be appropriate if the contact(s) can be agreed on and signed as such?
If we think about schools and the complexities of family lives these days, a simple list of contacts might be appropriate if the constraints of communicating health information are observed?

mike stone 12/05/16

I checked back to ask what that meeting early this year had decided about this 'single main carer' issue - the answer was (April 27):

Dear Mr Stone

Thank you for your email and for sending results of the discussion forum.

Unfortunately due to a number of reasons, there was no meeting held earlier this year, however I understand the whole process is currently being reviewed. In April 2016, NHS England took over the responsibility for the National Information Standard (SCC1580). I have forwarded your email to their mailbox for enquiries

[log in to view email address].

Just to update you, all information including outstanding issues, are being dealt with by the End of Life Care Team who are in the process of setting up a new Digital Steering Group to oversee the management of the information standard, along with the wider digital agenda.

Sent on behalf of the National End of Life Care Intelligence Network