The Edge of Health

Category: Service Users and Carer Council

The Service User and Carers Council (previously the Service User and Carer Forum) was established within the Faculty of Health and Social Care in Spring 2012, to share good practice in the design, development and delivery of health and social care education and research.

Life with a child with complex needs

My name is Jill and I’m mum to Noah who is 8 years old. He was born with a rare type of interstitial lung disease and following lots of investigations, Noah had a tracheostomy and was put on a 24/7 ventilator with oxygen. He is now only on the ventilator when he is asleep or is poorly which is good. Noah is also now under investigation with the euro team and a clinical geneticist, as they think Noah has further gene abnormalities and some brain damage. I also have another son Oscar who is 6 and is well.

I’ve broken down a few key areas to illustrate some main points:

Diagnosis – children like Noah often have a lot going on, they don’t fit into a ‘box’ and so no one really knows what to suggest – everything is trial and error. There are always further investigations and always other theories which sometimes are investigated and you build your hopes up for an answer, and often there isn’t one. This is really draining and exhausting to think that you’re getting somewhere and actually you’re back to square one.

I am a member of a couple of forums for parents of children with life limiting illnesses and a really common theme is that parents don’t truly feel understood by the general population. The only people that can truly know the horror of life in hospital where literally life is on the line and the medical traumas that we endure at home are people that have lived it – other people who have similar complicated children. Even other family members are often not told what is happening or that there are hospital appointments because everyone wants to say the right thing but there is no right thing to say, and then they try to understand and say something relevant but it ends up being something like ‘ have you ever thought that it might be to do with Hayfever’ and obviously it’s not, but I suppose they don’t know what else to talk about – so it’s better left unsaid.. which actually leads you into feeling more isolated.

Carers – We have a big care package for Noah. Every night overnight and during the daytime at school. I need these carers. I hate having people in the house, those that I wouldn’t choose as my friends ordinarily. I hate having to be fully dressed all the time in my own home because I don’t want carers seeing me with little on. I hate that sometimes I have nothing in common with them and we’ll sit around the kitchen table and actually have nothing to say. Imagine that – when you just want to sit and have your toast but you feel that you need to make conversation but there’s nothing at all to link the two of you. On the other hand carers have a huge impact on the lives of the boys – carers have this job to do but this is our life – a carer leaves and they ask ‘does she not like us any more, when can she come back, why did she leave? It’s such a hard balance. Also many carers find it difficult to include Oscar, my youngest, which leaves him feeling left out and sad. He is always saying that people don’t care about him. Even without carers I have be in the same room as Noah, and Oscar often has to fend for himself – he says it’s not fair – I agree with him – he’s drawn the short straw in many ways.

We’re ruled by time with carers – they always need to finish a shift on time which often cuts our plans short. We have to move mountains to get extra cover if my partner and I want an evening out together. When a shift goes down, I spend most of the day running around contacting people to see what shifts could be rearranged / who is working / free etc. I shouldn’t have to do this, it’s the job of our agency, however I do it quicker as it’s in my best interest to find a solution.

Competencies – they have to be done but Noah hates it – he gets scared when there is someone new practising on him. It’s not nice. Also on competencies days, there’s often 3 medical people around at the same time when I’m trying my best to get the boys ready for their day.

Professionals – some are great, and others are not. I deal with 54 professionals / departments and juggle them all along with running a house and running a company. I know what is happening with every aspect of Noah’s care, whether it be an issue with the EHC at school or the orthotics in his shoes, or that we have to do a sleep study at home. Fifty-four avenues of professionals that are great at their jobs but have no idea what’s going on with each other. This adds time pressure on the MDT / Team around the child, and meetings become less attended which is frustrating. When we were newly out of hospital, everything was very dramatic and unstable with Noah and around twenty people turned up to discuss his treatment and his care – as time has gone on, less and less people attend but Noah is still as sick, still the same diagnosis, still has emergencies.

-Jill, Service User and Carer

Carer vs Caring or a Caring Carer?

I am a non-professional carer for my daughter, twenty-four hours a day, seven days a week. Do you know that the dictionary definition of the word ‘caring’ when used as an adjective is: “feeling or showing care and compassion?” It’s also used by health and social professionals to describe a person or function. For example, nursing is a caring job. On the other hand, when used as a noun, ‘caring’ directly relates to the: “practice or profession of providing social or medical care.”

The problem I discovered is the fact that the “provision of social or medical care” significantly outdistanced the “care and compassion model.” This is because it’s based on the premise that an illness, frailty, disability, mental health problem or addiction could / should / will be “cured” purely by medical intervention, which can only be delivered by a professional Carer. Sadly, experience shows that simply targeting the medical condition in isolation and taking no account whatsoever of my daughter’s holistic needs often left her with low expectations, limited choices and diminished control over her own life. 

The “showing care and compassion” model, suggests that it’s not really the illness, impairment or difference at the heart of the problem. It’s the way that society organises itself to artificially create both physical and attitudinal barriers. This is all too often enhanced by the deliberate enforcement of poorly written, outdated, entrenched and often harmful, rules, policies, processes and procedures.  

The role of non-professional carer is open to anyone, from children through to the adults. All those who look after a family member, partner or friend who needs help and cannot cope without their support. It’s rarely a formal career choice, however, on the plus side, age and lack of qualification is no barrier! Mind you, there must be no throwing a sickie, no going home early, no time-out for holidays, what’s more – there’s no pay! 

Unfortunately, such a role is rarely recognised by health professionals. A recent Carers survey showed that over 70% of the 2,000+ carers involved came into direct contact with GPs, doctors and nursing staff during their journey. Yet the health professionals only acknowledged 11% as carers, whilst GPs only recognised 7%.

My experience as a non-professional shows that caring for someone outside of the hospital environment is a twenty-four hour a day, seven days a week commitment! It’s a role that doesn’t simply administer medications, enforce the inflexibility of “protected” mealtimes and the imposition of rigid house rules to treat the condition. 

So, my request to all health professionals, including GP’s, doctors, nurses and students is to recognise and embrace the issues holistically. Being a ‘caring carer’ involves all aspects of communication, information, inclusivity, flexibility, respect, dignity, compassion, connection, availability, as well recognition as a medical expert for the person you care for. That’s the definition of a “caring carer!”

-Allen Bewley, Service User and Carer

Something positive, something negative, and a take-home message for our students.

I am proud to have been involved in Service User and Carer involvement in one way or another for around 40 years or so now. One of the most exciting areas of activity, in my opinion, has been the involvement in professional education and in particular, Social Work courses.

Having a central budget and a requirement for our involvement has made a real difference. Nothing is perfect, but our involvement as Service Users and Carers has really changed Social Work education for the better in my opinion.

I believe that having Service User and Carer involvement from the start teaches students to work in more tailored and personable ways from the beginning, and I am proud to have been involved in this process alongside many others.

I am also involved in the disabled people’s and service user organisation, Shaping Our Lives. You can learn more about this network and find lots of helpful resources at: https://shapingourlives.org.uk.

A downside of Service User and Carer involvement from my point of view, is that it can often feel as though we are taking two steps forward and one step back due to financial cuts in services and regular changes in policy. Such events can set limits to the support available and can make it difficult for Service Users and Carers who are committed to making a difference.

So having covered the positive and the negative, I’d like to share a take-home message to our students:

There is no getting away from it – working in Health and Social Care can be difficult, but at the same time extremely rewarding and impactful. You are capable of making a positive difference to the lives of other people – the lives of people who are ‘up against it’ – sometimes more than you could ever imagine.

So, do the best you can and remember, you are being equipped with professional competencies and skills. If you combine these skills and listen to what Service Users and Carers say to you, then ultimately you are in the best position to assess what course of action will be most helpful.

Believe in yourself, stick by your patient, and never underestimate the importance of your role.

Profile image of Peter Beresford

Profile image of Peter Beresford

–  Professor Peter Beresford OBE

Professor Peter Beresford OBE is a leading figure in the arena of citizen participation and involvement, and perhaps the pre-eminent voice in relation to service user and carer participation in service design, delivery and evaluation. He is currently Professor of Citizen Participation at the University of Essex, Emeritus Professor of Social Policy at Brunel University, Co-Chair of independent user-controlled organisation, think tank and network Shaping Our Lives and a visiting professor at Edge Hill. In 2007 he was awarded his OBE and in 2016, he was named as one of the top 100 influential people in the UK in relation to issues of disability and impairment.

 

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