Actively involving patients and family in care - #partnersincare

Our patients and family have told us that they want to be more involved in their treatment and care while in hospital. Our patients and family have also told us that communication with them isn’t the best and they are not always aware of what’s going on. We have informal arrangements for patients who are living with dementia, but this often excludes other patients family members from being involved and we hear stories of family members at the ward door being told they can’t come in, while others are allowed.

Even then, we are not seeking to encourage family members to become a partner in the care of their loved one which means we are missing out on so much rich information and small nuggets of knowledge that would mean so much to our patients. We heard a story recently where a patient of ours who has Motor Neurone disease and could not communicate well with us. ‘Brian’ relied on his wife to communicate for him to advise the ward team of what works for him and what doesn’t. By excluding Brian’s wife in his care, mostly through the rigid adherence to traditional ‘visiting’ times, Brian became frustrated and upset as we did things to him where he wanted involvement! Hear about Brian’s Story through this poem by Ward Manager Clare.

#partnersincare has been developed quietly to promote across the Trust the principles of working in partnership with family and patients. We are not creating an initiative, or project, just setting in motion what we hope will become a strong social movement for change, based on it just being the right thing to do.

Who are we to say that wives, husbands, sons and daughters can’t take an active role in the care of their loved one?

How can we say that you are not ‘allowed’ on the ward to see mum or dad? Who are we to impose that? A number of wards have responded to the challenge. Some wards have significantly extended visiting times, and others have abandoned them all together. We are hearing stories of family members supporting mealtimes, accompanying mom to the toilet, fetching glasses of water and helping dad get up, dressed and moving on the ward. As we see this progress, we expect to see greater involvement as family members and staff become more confident and we truly embrace the shared care principles.

Communication is improving, with family and patients being more involved in discussion and decisions, which helps with discharge planning, and we have heard from complaining families that if they had been involved more there would not have been a problem. It is early days, but we are opening up all kinds of possibilities and breaking down barriers to changing the way to provide care for our patients by being open to family input to support the care teams on our wards, while loved ones are in hospital.