7 June 2021

From Ann Smith, Chair of CNWL's Carers' Council:

Every year Carers UK takes on a mission to raise the profile of Carers on a national scale. They are a non-profit organisation calling for change, recognition, and support. They sit on various Government departments and committees.

This year the campaign is ‘Making Carers Visible and Valued’. Back in 2014, carers saved the country £57 billion - today we save £530 million every day, that is around £136 billion annually! This figure is based on hours covered at minimum wage (£8.91 per hour), and is equivalent to the entire NHS budget. Approximately only 29% of unpaid carers qualify for Carers’ Allowance (£67.60). It is also a taxable benefit and can impact on the cared-for person’s benefits too, and you cannot claim if you have an income of more than £123 a week, are in receipt of a state pension or in full time education, which can have a real impact on young or young adult carers.  

The cost has risen as we faced the impact of the Covid pandemic - face to face support has been suspended, day centres providing activities along with the 3rd sector groups were suspended or closed, so more responsibilities have fallen to carers to fill these gaps. It also meant no respite from your caring role with the closure of these facilities. It falls to the carer - my son used to play football, attend a gardening club, attend arts and crafts clubs and social events, but no longer can because they are all closed. The biggest problem is that due to restrictions going out was not permitted.

  • In a recent poll, 81% of carers stated that their caring role has increased and they have had more demands on them since Covid, especially the seriously ill, elderly and frail and carers of those with long term serious mental illness. 
  • 63% have warned that they are worried as to how they can continue at the current level

The Trust has a very active and well managed Patient and Carer Involvement Team which sits alongside us on the Carers’ Council. The Carers’ Council has a very senior member of the Trust, Robyn Doran (Chief Operating Officer), who is involved, listens and shares our concerns. 

The Trust has signed up for the Triangle of Care (ToC). This enables the carer to be an equal partner in the care of the service user. This recognises that the carer has an integral part to play in the recovery process. There are many studies and papers written finding when carers are involved the recovery pathway, the outcome is greatly improved for the service user. 

So what does this mean in practice for carers, and what do we expect from services to support us in feeling visible and valued? Below are a few examples, but certainly not an exhaustive list:

  • When your loved one is an inpatient – a welcome when being escorted to the ward - How are you? How was your journey? Simple things that make a huge difference and make you feel like a person - a human being with feelings. Most importantly, please pre warn us if things have not gone well; I remember on one occasion my son had repeatedly hit his head on the wall so I was faced with my son with two black eyes and large bruises around his face - you can imagine how I felt, and seemingly no thought from staff as to the impact of this on me as his mum.
  • A welcome meeting introducing the healthcare professionals and a booklet with relevant numbers, contact details, information about visiting etc. Many wards do this already, but the Involvement team and Triangle of Care Steering Group are coproducing a template Welcome Pack to make this consistent across the Trust.
  • A link person within the care team who can speak with us and introduce us to the service.
  • Signposting to relevant organisations that can offer help and support and a carer’s assessment. The Involvement Team has put together resource packs with extensive signposting bespoke for each borough, which are available on the CNWL website.  
  • Check with service users who their loved ones or carers are and how they would like them involved – we can add a lot and we all want the same things, but we  need to be kept in the loop. 
  • No missed appointments - CPA, managers meetings, section reviews and renewals and many other meetings relevant to assist with the service user’s recovery happen and carers should be on the invite list. Many times I have had a call from my son asking why I was not at the meeting - "Do not you love me anymore mum?".  I was not invited and it was heart-breaking for me. 
  • A platform where we can share important information that will be useful for the team in the recovery process. For example my son, when becoming unwell, puts lots of clothes on and I share that with staff- then when the staff see that happening they can act promptly - early intervention is always better for all.
  • Regular phone calls as opposed to only when something terrible has occurred. As a carer you come to dread the calls from the ward. If you are in regular contact it takes away that anxiety. 
  • The staff to have a real sense of what it is to be a carer and the challenges we face on a daily basis. Remember, you go home at the end of your shift, we do not.

As part of Triangle of Care, Carer Awareness Training is offered to all members of staff (not just the carers champions) as part of the process. I look forward to either meeting you face to face or via Zoom in the future at one of these sessions. Many members of the Carers’ Council have given the training and some of you may have already attended the training. I do hope you found it enlightening and useful.

I am very proud of the Carers’ Council and the Involvement Team - they work tirelessly to help carers, both at Trust level and locally, as well as managing their caring duties. For many of us it is a very slow process and we get weary at times, but for the most we are a great group of people who are hardworking and committed to making a difference. 

Most recently our success has been with the CNWL Check in and Chat service. A service that came out of the Covid pandemic. We said it would be an ideal platform for carers, so we brought it to the Carers’ Council and made the case to Robyn Doran and she and the Volunteer Team acted on our request immediately, so the service is now available to all carers as well. I can testify that it is an excellent service. It allows me to have an hour per week when I can speak about what is good and what has been a bit tricky. I have a sense that the person is listening and regards me as important. It takes away the sense of isolation and reminds me that what I do is worthwhile.  Like everyone, from time to time we need reassurance that we make a difference. 

Thank you for reading, and I hope you enjoy Carers Week.

If you have any comments, suggestions or views please contact the Involvement Team via involvement.cnwl@nhs.net. I would love to hear from you. 

You can also email the team for an invite to our Carers’ Tea Party on Zoom, on Friday 11 June, 12pm to 1pm.

Kind regards,

Ann Smith

Chair of CNWL’s Carers’ Council