Alan Worthington, one of the authors and a carer with a long experience of engaging with acute services on behalf of his family, asked “What if?”
WHAT IF? – A Carer’s journey through acute care services
(With apologies to Rudyard Kipling)
What would help carers and service users?
When asking for help, what if…
- both my relative and I had a phone number to call if an acute situation were to develop
- as a carer I could call the staff, tell them the need was urgent and I would get a quick response
- when assessing my relative, the worker(s) talked to me as well, so as to get a clear picture of how to help
- the worker(s) tried to get a good picture of what my son was like when he was well and aspired to help him to return to this.
- staff gave explanations and offered a choice of options
- treatments were explained and strategies for managing the medication were given
- as a carer I was given the same sort of information, support and coping strategies that are now seen in many inpatient settings
- I was given information about the right things to do, with staff offering me reassurance when my relative became a person I couldn’t recognise.
- the service was close enough to easily keep up family support
- the service could offer alternatives to a hospital bed.
- the staff gave time each day to have good conversation and give support
- the ward provided a warm friendly atmosphere with things of interest to do
- there were groups to explore general life and mental health problems, with opportunities to learn from others and develop companionship
- when I visit the ward I was welcomed as a friend and supporter of the work and staff accepted that I wished to contribute for my relative’s benefit and the benefit of others
- I was offered information about the ward and services
- when the named nurse was not available, there was someone else who was willing to talk to me.
At leave or discharge, what if…
- I was involved in the planning and we all worked out “what to do if?” eg if there was a relapse or if the carer became ill
- my relative was given practical help with keeping his medication sorted and help with remembering to take it.
Afterwards, what if…
- when the episode was over, the services asked for feed back and
- that I knew that my relative would be visited
within 2 days of discharge
- that I knew that his physical and mental health would be reviewed at regular intervals
- if necessary, we would be offered family therapy or talking therapies.
…then our caring duties would diminish to a point when we could look towards our own recovery
Renal failure is a disease that affects families. During the recent home dialysis roadshows the importance of carers has become even more apparent to me and the key elements to achieving the triangle of care may well be useful to consider for kidney care services. The key element states that:
1) Carers and the essential role they play are identified at first contact or as soon as
- carers’ views and knowledge are sought, shared, used and regularly updated as
overall care plans and strategies to support treatment and recovery take shape.
- staff need to be aware of and welcome the valuable contribution carers can make and be mindful of carers’ own needs 9
- staff need knowledge, training and support to become carer aware.
To ensure proactive engagement carers need to be part of the care planning and treatment process across the care pathway, ie for both inpatient and home treatment, the service should have clear policy and mechanisms to ensure these are routinely used, including:
- guidelines on confidentiality and for sharing information – a three-way process between service users, carers and professionals
- information release forms and protocols
- advance statement forms and protocols.
- carers’ lead or champion for the ward and CRHT
- carers’ links delegated for each shift.
5) A carer introduction to the service and staff is available, with a relevant range of information across the acute care pathway, including:
- an introductory letter from crisis team or ward explaining the nature of the service provided and who to contact, including out of hours
- an appointment with a named member of the team to discuss their views and involvement
- ward orientation/induction procedure and leaflet
- carer information packs
- discharge planning and aftercare support.
6) A range of carer support services is available, including:
- carer support
- carer needs assessment
- family work in acute care.
There also needs to be regular assessing and auditing to ensure the six key elements of carer engagement exist and remain in place.
In addition, there also needs to be regular assessment and auditing to ensure that the 6 key elements of care engagement exist and remain in place.