Carers' guide to advocacy

This blog was written with Jill Pay. Jill has many years of caring experience, caring for her daughter for over 20 years, who is now in residential care. Jill worked at Camden Carers for 15 years until her retirement in 2021. She now works as an independent trainer and writer, as well as enjoying more time for her art.

As carers many of us will find ourselves advocating for the needs of the person we look after without even realising it. Put simply,

“Advocacy is all about people having more control over their own lives. An advocate helps someone to make their own decisions, speak up about what they want and need, and achieve their own goals.”

But, there are some circumstances where we just need someone to fight with us or for us. This guide explores what advocacy is, when we might want advocacy support and how we can access it. There are some resources at the end which might be helpful.

1. What is advocacy?

2. Why might we need advocacy?

3. When might we need an advocate?

4. How might advocacy work?

5. Where can we find an advocate?

6. What can we expect from an advocate?

7. How can we access free advocacy support?

8. How much does an advocacy service cost?

What is advocacy?

• Being the voice of – speaking in favour of, or on behalf of someone who is not able to express their views.

• Supporting someone to stand up for themselves and others.

• Giving someone a chance to have their voices heard; to help people understand their rights and express their views.

• Helping someone to achieve their aims through connecting with the right services, agencies, etc.

  
  

“An advocate is like having someone in your corner”

Why might we need advocacy?

• Lack of confidence which may prevent us from speaking out.

• Finding out emotions come out when we are speaking may put us off advocating for ourselves or the person we care for.

• We may have our own learning disability, anxieties, or Mental Health condition, meaning we struggle to advocate for ourselves or others.

• Spoken English may be challenging if it is not our first language, or because official language or jargon makes it harder to understand.

• Sometimes, meetings with professionals can feel intimidating,  especially when there’s jargon or pressure to make big decisions fast.

• We may feel we have a lack of knowledge or understanding of the challenges or processes around an issue. 

• We may lack clarity around the rights or entitlements for ourselves or the person we care for.

• We may have a difficult relationship with the person we care for, making advocating for them difficult emotionally for us.

• We may have uncertainty that our voice is strong enough to be heard –or haven’t felt heard previously and want support to make our case.

Author and carer advocate Matthew McKenzie on why adovcating for ourselves matter, including using it as a way to validate our experience, our effort and our worth.

“I didn’t feel heard by social services. Having someone on my side helped me get my views across.”

“When I was alone in meetings with professionals, my feelings of fear and anger began to get too much, and I was accused of having anger issues. Having an advocate helped me remain calm and focussed.”

When might we need an advocate?

• When important decisions are involved and negotiations with professionals or authority figures are needed.

• If we need to raise a complaint or go to tribunal.

• If we wish to make a complaint about a service.

• When we want more information and understanding of our rights and entitlements, or other services generally.

• If we feel our rights or the rights of the person we care for, are not being upheld.

• When there are on-going concerns with our situation needing regular advocacy support.

  
  

“When a new risk assessment identified the need for two people to support my daughter, the options offered meant I no longer had a break from caring. With support from my advocate, I was able to re-negotiate the care package to ensure nobody lost out.”

How might advocacy work?

There are several ways that an advocacy service might work. Depending on the activity being supported and our own personal preferences.

Options include:

• In person, face to face support at meetings of various kinds.

• Via letter, telephone, email, Zoom, etc.

• With or without us present (with our permission and depending on the circumstances).

Where can we find an advocate?

Professional advocates can be sourced through different organisations and agencies, depending on circumstances. There’s no one-size-fits-all. Sometimes we might want to be our own advocate. Other times, we might want a friend, a family member, or someone with experience to stand with us. In this case, we should be clear on how we expect them to help us.

1. Self-advocacy

Many of us feel confident and able to speak for ourselves and on behalf of the person we care for. This can work well as we will know what works for us and those we care for.

If considering self-advocacy, Carers UK has a guide called Being Heard which provides information. And suggests ways to help us  advocate for ourselves  and those we look after.

We may also want to read up on our Carer's Rights.

2. Carer Services

Most Carers Services have specialist carer support workers who can advocate for us. If not, they can support us to identify an advocacy service in our area. We can find our local Carers’ service here.

3. Local and National Organisations

Local and National Organisations relating to specific conditions often have support for carers, including advocacy services. Our condition-specific guide is a good starting place.

4. Independent advocacy services

These may be charitable, or private. If a fee is expected, you might be able to get funding from the Local Authority as part of a Carers Assessment or get a grant from an appropriate charity (conditions will apply).

Find out how much we might expect to pay for advocacy services.

Note: We are still considered to be a carer whether we live with the person we care for, whether they are in residential care, or whether they live in the same part of the country as us. We are therefore still entitled to advocacy support.

Example of advocacy service in action

Janice’s husband had recently moved into residential care and was adjusting well at first. However, when she visited him a few weeks in, she noticed that he had some unusual marks on his arms.

Despite being an assertive person, Janice found it difficult to get her concerns across with the care home staff. She accessed the support of an advocate from her local carers’ service, and it became clear that a potential safeguarding case needed to be investigated.

In her own words:

“I was out of my depth and felt distressed as I had been reluctant to place my husband in care. Having the advocacy support of the carers’ service gave me clarity and peace of mind that all would be taken care of – I felt much less pressure and a lot less guilt too!”

What can we expect from an advocate?

• They are independent of agencies who provide services to us and our cared-for.

• Are objective and non-judgmental – respecting our choices.

• Work with us, not making decisions for us – but respecting our decisions.

• Will not be emotionally involved – this prevents bias when supporting others.

• May refer us to a more specialist agency which lies beyond their remit – e.g. legal advisors, benefits advisors. The advocate may still support us to access those services, attend meetings etc, as appropriate.

• Will only be involved for as long as needed. As a result of working with an advocate, we may then feel more confident in speaking for ourselves next time.

Another case of advocacy in action

Brenda lives with her mum who has dementia. She felt the relationship with her mum’s social worker was poor, and that they were not listening, nor understood the difficulty involved in her caring role, especially as Brenda has her own health concerns. She felt her mum needed far more support than she had and struggled to get this across in meetings with social services.

Brenda found advocacy support from her local carers’ service and spoke to an advocate called Lucy. Lucy was able to support Brenda to get a care review meeting changed so that she could attend with her.

Having Lucy alongside Brenda, helped improve her working relationship with the social worker; Lucy supported her at several meetings as well as care/carer reviews. Lucy also worked with Brenda to find different respite options for her mum, to cover times when the original respite home was unavailable. Lucy also liaised with the social worker on Brenda’s behalf, which she said improved their relationship.

Brenda reported how refreshing and enabling it was to have someone on her side who had no preconceived ideas, and who did not judge her, but listened to her. She felt she was taken more seriously by social services and better able to deal with them.

Eventually, a care package was approved that everyone was happy with, giving Brenda’s mum the extra support that she and the family needed

How can I access free advocacy support?

There are opportunities for free advocacy in some situations, through:

• Our local carers centre (find our closest centre here) sometimes have a free advocacy service.

• Carer's Assessment can provide signposting or funding for advocacy if identified as a need.

• Condition-specific charities often have a free advocacy service available

  
  

“The Down Syndrome Association offered us free legal advocacy for a mobility claim. The solicitor was incredibly helpful and gave advice over email, which could be included in our claim, and which I then took to our tribunal”

How much does an advocacy service cost?

Often independent social care advocacy services are subsidised for us, with a reduced rate of around £35 an hour. However, this will vary depending on where we live and what we need. In any case, Local Authorities as part of their duty of care are expected to refer carers to an advocacy service where appropriate.

Communicating that we’re using an advocate

We are legally entitled to have representation when interacting with services, especially Social Services. It’s within our rights to involve anyone we or those we care for choose in negotiations with services; to have input into how services are delivered; and to self-determine what would support us as a carer.

Considering these rights, we can feel confident when communicating either as a self-advocate, or with the support of an advocate. It is advisable to let services know who will be accompanying and/or supporting us and/or our cared-for at meetings as well as outside of them.

Useful Resources

• Carers UK Being Heard – relevant editions for each area of the UK

• NHS Advocacy support (someone to speak up for us)

• Information on Complaints and Advocacy from Carers Trust

• Carers Support from MIND (not specific to Advocacy)

• Dementia UK support carers through their network of Admiral Nurses (also with a support line)

• Age UK offers information, advice and advocacy for over 55s, through its local branches

• The Disability Law Service supports those with disabilities. Also a good resource for carers if the disabled person lacks the capacity to seek their advice

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