1 October 2020

A message from Robyn Doran, Chief Operating Officer at CNWL

As we move into this next phase of Covid, there are many lessons to learn. None more so than how we support service users (everyone’s first priority) but just as importantly, those who care for them.

I’d like to share with you some of the feedback I had from carers about our services.

We recently had a carer from our Mosaic (Children’s) services in Camden come to the Board and give very positive feedback about the care and support she and her family had from our team, and I know there are lots of other cases where the feedback is just as positive.

But in the spirit of learning lessons, sharing them, so we can improve next time, I thought I would bring you the voices of some carers whose experience wasn’t so positive.

I think their messages are really clear about what the Trust needs to do differently next time.

The feedback is unfortunately not unusual and there have been many local and national reports where feedback is very similar – Covid presents very real challenges to patients, carers and staff alike.

Quotes from some of our less satisfied carers:

Many carers need local health and social services

“We all understand there has to be a new way of working, due to the virus; but life goes on and our caring role does not stop. We felt a plan has to be found to aid us all. There was a very patchy response to our contact with the support agencies within the borough. In general it was not sufficient and we hope it will improve."

“Never in my wildest dreams did I ever consider caring would be this hard, with no help from anyone.  I do have friends but they do not wish to hear the litany of troubles. A lot of us find it difficult to actually say ‘Help me’.”

“I understand Covid has been a challenging time and I cannot begin to understand the stresses and strains staff were under; many becoming ill themselves but we have to learn how we keep people safe and continue treating people and appreciating the role that carers do.”

We are asking staff to let carers and families know where they can get support – the CNWL website has a page of ‘Coronavirus Guidance for Carers’ as well as resource packs for carers in each CNWL borough or locality; these include local support, carers’ organisations and charities. See this page on our website. Staff should share this information with carers in their area.

Carers need to be involved in discussions about their loved one

“Service users may tell staff what they think you want to hear and of course with telephone consultations this is difficult to judge how they are actually doing. Carers understand that during Covid another way of working has to happen, was this communicated to carers? And how can they still be part of the consultation?”

“Staff should speak to both the service user and carer to receive different perspectives in relation to the service user because in my example, even though they were speaking to my mum, as long as she said she was “ok” nothing was being done because all the boxes had been ticked effectively. It was only after speaking to me that I could tell them what was really going on at home and how my mum wasn’t coping, that she was able to get some support in place.”

What we ask staff to do: Involve carers and families in consultations as much as possible (including phone and video appointments) where appropriate and give carers time to share information with you. Carers are often well placed to spot signs of deteriorating health or crisis in their loved one. Make it clear to carers exactly how they can raise concerns when they need to, including out of hours. This will help their loved one get the best care quickly and you will also be helping the carer feel less alone and desperate. Your input could be life changing for the carer. When discussing patients’ needs in multi-disciplinary team meetings, talk about the role and needs of the family too – add it to the MDT agenda.    

Communication, communication, communication!

“All of my mum’s support services were effectively cut off. She had been attending Day care twice a week which understandably had to close due to Covid. However, nobody from the day care centre contacted mum during the three months of lockdown.”

“The care of the person we cared for was patchy. Prior to lockdown we felt fully involved, but appointments dried up, and when there was an appointment we were forgotten.”

“You asked what I thought could be done for Carers. Communication, communication and communication!”   

What we ask staff to do: Make sure communication about appointments is being maintained.  Keep a list of patients and families considered particularly vulnerable and who may need additional contact and make a plan for contacting them.  

Bear in mind people’s needs around technology

“Not all of us have access to tech and not all service users are comfortable using tech.”

What we ask staff to do: not everyone has a laptop, tablet or suitable phone. Some people lack the private space to hold an appointment virtually or privately from home.  Staff are asked to discuss with the patient and family what method of communication works best for their situation, and to do this “without passing the responsibility back onto the carer which can be overwhelming for us too.”

Help carers keep in touch with loved ones in hospital

“Staff need to be compassionate when it comes to allowing visitors in hospital.”

What we ask staff to do: Communicate clearly to carers if there any restrictions on who can visit. Make sure requirements about wearing PPE (personal protective equipment) and temperature checks are made clear in advance so people know what to expect. Understand that for a carer, not being able to visit loved ones can bring on feelings of worry, sadness, guilt, stress, anxiety and depression – so it is essential to support patients and families to stay in touch however possible. We have learnt from the first wave that if a person is unable to visit their loved one, methods such as phones and iPads can be used to aid communication, as well as letters and messages from loved ones.  Even when this is not possible, staff can still update carers over the phone to provide reassurance and information. Communication and knowing that their loved one is in safe hands makes all the difference.

So, thank you to these carers for their honest feedback – we listened and heard you. And to all staff, please make sure you talk about carers in your team meetings and how best we can support them as we enter the next phase of COVID.

The central involvement team and Carers Council members are happy to advise staff and staff should familiarise themselves with our ongoing work to meet the Triangle of Care standards.