My Role as Carer Governor for UCLH

Ros Jacobs is Carer Governor at University College London Hospitals (UCLH).  We interviewed her to find out more about her role and how she represents unpaid carers like herself at the hospital.

UCLH Carer Governor Rosalind Jacobs

As Carer Governor at UCLH, I represent carers like myself. My role is to make sure that carers’ views are heard and to improve the carers experience. So many people do not realise that they are carers, yet are working hard to support a partner, family friend or neighbour. As a carer myself, I understand the needs and challenges that carers have and it’s these unpaid carers that I’m here to represent.

UCLH delivers a high level of care and is a leading hospital with an international reputation. As a Carer Governor, where I feel that I can personally make the most difference is to represent what carers need at a practical level. It’s these, sometimes seemingly small practical things, that can make a big difference and help to take some of the pressure off carers, as they support their ‘cared-for’.

What Is Your Experience as an Unpaid Carer?
I have been a parent carer for my daughter for almost 30 years, who has been a University College Hospital patient for 14 years since she transferred into adult services from Great Ormond Street Hospital at 16. My daughter’s needs are complex, so we use many UCLH departments, mainly at University College Hospital and the National Hospital for Neurology and Neurosurgery (NHNN). We also use other hospitals where UCLH provides medical care and support locally. Due to this, I totally understand what it’s like to live as a carer and to manage all the stresses it brings to the family unit.

My daughter needs 24/7 care from a care team. She has two carers during the day and then one at night. She is also married to someone else with a complex condition. They both live with me and my husband to make sure that their care is provided. This helps give them more independence and live the life that they want to lead.

How Long Have You Been a Carer Governor?
I have been a Carer Governor at UCLH for 6 years and have come back now for my third term after a break of 3 years. I now have 2 years left of my term as a governor. I volunteer at NHNN and I’m also Vice Chair of Friends of UCLH.

What’s Involved in the Role of Carer Governor?
As part of my role, I attend four Council of Governors meetings a year. These are attended by a team including the CEO, Chief Nurse, Medical Directors, Finance Director and Non-Executive Directors. There is also the opportunity to get involved in other meetings and groups. I have chosen the ones where I believe that I can make most difference on a practical level for carers. This has included the Learning & Disability Group, Transport Group and the Ground Floor Group that’s responsible for signage, toilets, Accident & Emergency and the publicly accessible areas of the hospital.

What’s Needed in Your Role?
Where I want to achieve something, I will make sure that I see it through. In this way I can make a difference on behalf of others who don’t have a voice.

What’s Challenging in Your Role?
One of the biggest difficulties is getting to hear from other carers like myself and I really value carers when they get in touch with their views. To contact me, you can call UCLH on 020 3447 9290 or via the UCLH website.

What Do You Find Rewarding about the Role?
As a carer you have enough challenges in life. It’s about being a voice for people on behalf of others, to make their lives easier. It’s been a fantastic journey. It’s been brilliant to stretch my knowledge and to allow me to use the knowledge that I’ve gained over the years to help others. On a personal level, it’s also been about doing something for me, helping to regain an identity again outside of my role as a carer.

What’s in Place to Help Carers at UCLH?
At UCLH, it’s fundamentally understood that the input of carers, in the care that the hospital delivers, is priceless. I am able to contribute carers’ views of the trust’s Carers Policy. This covers a wide range of issues, ranging from making sure that carers have access to food and drinks to how carers are able to input into the care that a patient receives.

The medical teams understand that it’s important for patients to have support from a loved one or carer. It’s recognised that it’s about treating the whole family, not just the patient, and handling conversations with family members in a kind and thoughtful way.

In my experience as carer, it’s the practical issues that can make all the difference to a carer and their experience of a hospital. These include things like:

  • Easy parking
  • Easy access to professionals
  • Access to food for the family member
  • Easy transport to get to hospital
  • Being able to travel with the patient
  • Easy access to the ward
  • Support in a phone conversation – the hospitals are happy to talk the patient representative or carer

These are all examples of things that are also included in the Carers Policy and are in place to help the experience of carers.

What Have You Helped Change for Carers?
As a Carer Governor, I’ve lobbied for improvements to transport for carers and this is something that has improved in recent years. Blue badge holders are now allowed one car to park outside the hospitals. They can book this online or by going to reception.

An example of a simple but important change that I’ve helped to achieve has been the introduction of locked disabled toilets on the Ground Floor of the hospital. The toilet can be unlocked using a special universal key for disabled toilets and a key is also available from reception. This means that the disabled toilets will be readily available for people who really need them.

What 5 Tips Would You Give to Other Carers?

  1. To write everything down that you want to ask of the medical team, to make sure that nothing gets forgotten.
  2. To realise that your knowledge as a carer is really valuable.
  3. Your observations of what’s happening on a daily basis are so important.
  4. If you have strong views that the medical professional has not got something right, then don’t be scared to challenge them.
  5. Build a relationship with medical professionals. The medical team are there to support you and are human beings just like you!

 How Do You Find Being a Carer?
I’m very blessed to have the ‘crème-de-la-crème’ of medical professionals that provide fantastic medical support for my family. But sometimes I feel that the responsibility of being a carer can be overwhelming. Dealing with the agencies that provide carers can be really difficult but, in my experience, I’ve found that smaller is usually better and more personal. If you’re not happy with the care team, then my advice would be to find someone else. In the past I had experience of caring agencies where the co-ordinator was not in control, so I moved to another agency. The care team come in to support your family needs. They should be professional and pleasant to deal with as they’re in your home. Don’t forget that!

How You Can Contact Me?
If you have any feedback about your experience as a carer of a patient at UCLH that you want to share, then do get in touch with me. I’m here to represent carers and it’s always really valuable to hear about carers’ experiences at UCLH. Where something’s not working as it should be or if something can be improved, I can alert the appropriate teams within the hospital, help to increase awareness of any issues and help to get things changed. I’m also happy to offer my advice and any help where possible.

I look forward to hearing from you!