Category Archives: Carers

Carers need more support and the proper tools and training for the job!

When I was asked to be part of a keynote presentation with our C4CC partner Carers UK to senior civil servants at the Department of Health, I was naturally delighted.

It was an important opportunity to lobby on behalf of the army of unpaid carers, who are so often forgotten when it comes to government policy.

C4CC has been working closely with Carers UK, which has been supporting carers for over 50 years and has had a major influence with successive governments. I was accompanied by Emily Holtzhausen, its Director of Policy and Public Affairs, for the meeting.

There were 16 people in the room, but we were linked by video conferencing to officials in Barnsley, Runcorn and Leeds, so I felt we had a good audience for our message.

My role was to give an insight of the life experienced as a long-time carer for my late wife Sheila. Also to give a wish list of how things can be improved in order to give these much undervalued people the opportunity to do this incredible job much better for all concerned.

It was a lengthy one, but boiled down to being better respected for the vital role we fulfil and not to be ignored and marginalised, as sadly, is so often the case.

As part of the C4CC co-production team, towards the top of this list was to be treated as an ‘expert by experience’, because we know the person we are caring for better than anyone, and are entitled to a major say in their treatment and support.

But, I was asked by the officials, if there was a single thing that you could change, what would it be?

My response:  ‘To have proper training and the tools to do the job, just as everyone else in a working environment has and is entitled to by law’ !.

In a workplace, employees have every right to expect to receive the proper training and equipment to carry out the tasks they are asked to carry out.

They have every right to expect their company is compliant with health and safety regulations to protect them and others.

It is nothing short of a scandal that Carers have little or none of these safeguards and checks in place.

They are just left to get on with it, caring for a loved one with complex issues and with little or no training in how to do this safely and effectively.

For example, how do you successfully care for someone who has major suicidal issues ?, how do you care for someone in constant and uncontrollable pain if you cannot be given a proper nursing bed for them to lay in ?, how do you wash and dress them ?.

The safe use of medication is also a real problem that needs to be addressed.

The cared for person will often need a complex range of medication, but little information is supplied to the carer about its side effects.

If more than one consultant is involved there can often be a problem with communication as I know from personal experience with my wife who suffered a serious reaction to drugs she was given by one consultant that conflicted with those given by another.

It resulted in a hospital admission for two weeks during which time her condition was described as serious.

In my role as an advocate for carers, I can quote many other examples of poor practice that simply would not be allowed to happen in a workplace, but are part and parcel of their world.

Carers have a right to get the correct tools for the job, when they are required, without the delays that often occur as local authorities carry out protracted checks and their own risk assessments.

They need training how to use them correctly and to nurse the person they are caring for and finally, and importantly they should expect the necessary support to make sure their own health and wellbeing is not adversely affected in doing such stressful work.

This means regular health checks for them and more respite breaks.

My presentation was completed when I posed the following question.

If tomorrow morning, instead of coming to work as usual, you had to give up working here to care for your loved one, as they now had an illness which required 24/7 care with no breaks, holidays or time for yourselves.

That this would be for an indefinite period (probably the rest of your life), that you would get no recognition, no incentives, no support, just problem after problem, day after day, and for this you would get paid less than 40p per hour, would you leap at the chance to do this ?………….., they all shook their heads, …..I had no takers !.

But I hope that Emily and I had got our messages across and that things will change for the better because carers deserve nothing less for the vital role that they fulfil.

International Volunteer Day (IVD) 2017

Volunteering comes in many different forms; it might involve spending a few hours per week helping out at your local hospital or a charity shop, or a much bigger time commitment that becomes virtually a full-time job.

On International Volunteer Day I applaud everyone who takes the time and trouble to contribute their bit to society and would encourage others to do the same.

For very personal reasons, I fall into the latter category, devoting between three and four days per week in my various roles with Carers UK, Carers Trust in my home county of Cambridgeshire and as a member of the C4CC Co-production Team, spreading the word about the vital importance of our ‘Three Cs’ in involving people and their community in their own care.

I’m a campaigning volunteer, raising awareness about plight of the hidden army of unpaid carers, who like me devoted a very large part of their life to looking after the one they loved.

For me, it was my wife Sheila, who I looked after, for much of the time without seeking support, for over 12 years until she died 20 months ago.

Her passing has made me even more determined to spread the word about the support that is out there and also to campaign for more, recently marking Carers Rights Day by visiting parliament to both lobby and inform MPs.

For me volunteering has become a drug, as I know many people out there are struggling to cope with the pressures of caring to the detriment of their own health and welfare, many in near poverty and unable to cope.

If I can help to raise this awareness more openly, then I believe my contribution will have helped to make a difference.

After all, I have acquired specialist knowledge from over 28 years of caring, a lived experience that gives me an insight into many of the pitfalls a carer is likely to encounter on their caring journey.

There is much fantastic help available out there, but in my volunteering role along with others of the same thinking, we have helped to shape and streamline many of the available services so they are more user-friendly and cost effective.

This means the much-reduced council budgets have a better chance of fulfilling the needs of those with long-term conditions and their carers.

I am now 73, retirement for me is not an option I wish to consider, neither do I want to just wander around trying to find something to occupy the time aimlessly. I want our great country to be the very best at what we are good at…leading by example!

I don’t criticise anyone who chooses to spend their time that way, but my view is that if you have a wealth of skills and experience that can be used to the benefit of others then it is a tremendously rewarding experience and one I would thoroughly recommend.

I have made so many new friends and acquaintances through my work with three fantastic organisations and I hope to play my part for many years to come because despite the Care Act of 2014 enshrining much needed rights into law there is still much to be done.

 

Richard Cross, C4CC Co-production Team member

Reflections of a long time carer

I have been a carer for nearly 20 years, with firstly my mother, and then my husband developing Alzheimer’s and becoming dependent on me for their support.

My husband is now in the advanced stages of this cruel disease and I am drawing on all my experience as a former nurse in the NHS to fill in the gaps in his care.

Many people are in the same situation as me, but do not recognise themselves as carers, but when an individual becomes increasingly dependent in relation to their physical or mental health needs, there is a gradual realisation that the caring responsibilities are taking over more and more of their lives and the relationship changes.

This is perhaps when they first see themselves as carers and it can be daunting.

You are worrying about them, how best to support them and how you are going to cope.

It is a new world for most of us and vital that the carer and the cared for are supported at that stage and that there are easy pathways to relevant information.

One of my roles in life is to volunteer for the local Alzheimer’s Society and I chair an Experts by Experience peer support group at our local Caring Café.

The carers that attend our support group share their experiences of what information, help and support that they have received have been most beneficial. Also, what has been lacking or has not worked for them.

As a member of the C4CC Co-production Team, it has become clear to me that applying the principles of ‘Three Cs’ of the coalition; Better conversations – Stronger communities – Partners in co-production; provides people with long term conditions and their carers with that vital support in testing times.

Here are my thoughts, based on experiences over these many years.

Conversations

One of the recurring stories that arises is that when a carer and cared for person initially attend their GP surgery with short term memory problems, there may be a real need for signposting to appropriate support even before a firm diagnosis is made.

The experiences of carers are variable and some carers feel really let down at this initial stage, not knowing where to turn next.

Where a GP is able to signpost sensitively and is much more proactive and helpful the support is really beneficial.

But, information alone is not necessarily enough. I well remember a new member of our carers support group coming into a meeting with a large bag of leaflets and booklets. She sat down and said ‘Can anyone help me sort all this out?

The local authority had provided her with copious information appropriate for a carer looking after someone with dementia, but no other support in sorting and selecting the information to support her particular requirements.

This is where our group and others like it can add value through our conversations.

Growing strong communities

It has been said by a member of our carers’ group more than once that the experience has been ‘life changing’.

Quite often, carers come with trepidation into our group. They feel so vulnerable and at sea and don’t know what to expect.

The sharing of experiences; the informal advice and the emotional support which is sustainable over the long term, is invaluable and we all benefit.

Within the café there are also professionals to enlarge the conversations.

The Caring Café is supported by our local authority because of the excellent level of services it provides in a community setting.

Under the Care Act 2014, local authorities must offer or commission services that aim to prevent or delay the need for support and to promote wellbeing both for people needing support and their carers, and I know we are able to do this in the Caring Café as do similar groups all over the country.

Co-production

One of my best experiences of the right conversations and co-production at the right time was when I requested a home assessment for my husband, who was becoming increasingly frail at the time and in danger of repeat falls.

The GP referred us to the local CCG Response and Rehabilitation Team.

The professional team that assessed my husband over several weeks treated us as equal partners during the process, were willing to experiment with equipment and handling issues and set in course a mutually agreed programme of self-funded support.

This was co-production at the right time.

Now, my husband is receiving continuing care, co-production has been limited to the relationship developed between the individual carer support worker and myself, the package of care being put in place through a provider agency.

The standard of care delivered is very much dependent on my personal monitoring of the carer support workers.

With my health service background I can fill the gaps in care, but others are not so lucky, which is why C4CC has a vital role to play in its promotion of the co-designing and co-delivery of services and rigorous monitoring of commissioned services for people with long-term conditions, particularly where they lack capacity.

 

Margaret Dangoor, C4CC Co-production Team member

Twitter: @mpdrichmond

Carers Rights Day

Richard Cross, a member of the C4CC Co- Production team, blogs on why Carers Rights Day is so important to him.

For 12 years I was one of the hidden army of carers, looking after my wife Sheila, who had complex medical needs, which eventually led to her being wheelchair bound and totally dependent on me.

It was a 24/7 labour of love and I had to live life through Sheila’s eyes, to meet all her needs, yet stay in control of the situation.

It was tough.

At times it was difficult not to feel resentful and bitter at the hand that life had dealt us at a comparatively young age. I was only 47 when I gave up my full time work as a auditor.

I will admit as well that I made mistakes and had I been able to access more support, I could have made Sheila’s life a lot better, her health would not have suffered so much as a result.

It was only a chance conversation with a local councillor I knew in my area in Cambridgeshire that changed my life, and Sheila’s care for the better.

She was able to cut through the red tape and help me get a much- needed stair lift I had been battling for, without success, for the previous four years.

The connection with the local authority also brought me into contact with my local carers support group – The Carers Trust Cambridgeshire – and I have been acting as a volunteer and advocate for them ever since, as well as a range of other organisations, such as Carers UK and C4CC.

It is my own experiences that have made me so passionate about spreading the word that unpaid carers and their wider family have rights — now enshrined in the Care Act 2014.

As much as anything it’s about their legal right to have an assessment of their own, independent of the people they care for — so their needs can be evaluated — and support — such as respite breaks — provided.

Sheila died last April and in memory of her I am determined that we spread the word that not only that support is out there, but how rewarding it is to volunteer to help others find that extra help.

But there is still a long way to go in raising awareness. In my own county of Cambridgeshire there are an estimated 78,000 carers, but only 9,000 of them access any official support.

With an ageing population this is a problem that is not going to go away, but I’m proud of the work that we have done locally to address this situation.

All our GPs have signed up to a carers support scheme, so when a carer comes into their surgery — maybe just to pick up a prescription — their details are taken and emailed over to the Carers Trust, who in turn can signpost them to extra services and support.

This GP support is so important, not least because carers need regular health checks of their own because the rate of burnout among them is a real problem given the every day stresses that do not go away.

It was very different back in 1991 when I first went to my GP after Sheila had a nervous breakdown. I was supplied with the necessary medication, which came with strict instructions, but felt I had no real say in her ongoing treatment and care, or access to the sort of community support I was later to access, but almost by accident.

Despite changes of attitude, we still have a long way in ingraining the notion of co-production, championed by organisations such as C4CC and Carers UK, where carers and the patient have more say over their treatment and the services delivered to them.

But if we are able to achieve this, calling on all the resources that are available in communities, and yes, by people simply having the sort of conversations that changed my life for the better, then it will be well worth the effort.

In short, the three founding pillars of C4CC – Co-Production, Communities, Conversation – are the way forward in achieving better and more focused care for people with long term conditions and we all need to work together to make this happen.

Carers Rights Day is held every year by C4CC partner Carers UK and they want bring organisations together to help carers in their local community know their rights and find out how they can get the help and support they are entitled to. You can find out more in the Carers UK ‘Looking After Someone’ – a guide to carers rights.

If you are caring for someone at the moment and would like to find out more about your rights and how to get help, click here.