Question

Jessie is the carer of James, her 25-year-old son with intellectual and physical disabilities and mental health issues. Jessie worked for 15 years as a social worker, but gave up her career when James was born and has been caring for him ever since. James is an outgoing young man, but he needs daily assistance with personal care, dressing, medication, meal preparation, transport, attendance at appointments, and financial management issues. Up until one year ago Jessie provided all the care for James, but Jessie’s health deteriorated and she needed the assistance of support workers on a daily basis. Jessie has painful arthritis which is restricting her movements and she has recently been diagnosed with a benign brain tumour which will require intensive treatment over a period of months during which time Jessie will be unable to care for James at all. While Jessie has been ill, James’ behaviour has become quite demanding which has increased Jessie’s stress.

In a short paragraph for each, answer the questions.

• Identify key changes that might include a risk of the care relationship breaking down.

• Having confirmed with a supervisor the risks that might lead to relationship breakdown, how might James’ individualised plan be reassessed or reviewed?

Answer 1

What happens when the carer becomes sick? What happens then? We have so little preparedness for situations like this, no one ever considers what will happen if an unpaid carer becomes unwell, and you can almost hear the groans of Local Authorities and Clinical Commissioning Groups as they’re left with the task of how to sort out a care package or care home for this person. And there’s the battle that goes on over who should fund the care, which doesn’t help. It makes care recipients feel like burdens when there’s a fight over who should be lumbered with paying for their care, and it makes us feel sad that, in ours and our carer’s hour of need, no one wants to take responsibility and help us.

I can provide an example of a person who lost his carer who was his mother. He describes it in the following manner :

I have lived this. I have experienced what happens when a carer gets sick, and I can tell you, it’s the most stressful and upsetting thing in the world. I have experienced horrendous things as a result of my condition and endured physical pain that would leave most people curled up in a ball weeping, but when my unpaid carer, my mother, became ill, it topped anything I could ever imagine. It was the worst pain I have ever felt when she received her diagnosis, one that I had been suspecting for 6 months, but nothing could ever prepare you for the magnitude of it. It was the worst experience of my life. The emotional pain was felt throughout my body, the stress was palpable, and I will be honest with you, I didn’t think I could cope with it, I really felt like it was too much for me to handle. However, I had no choice, and we had to make arrangements and sort everything out. We had three stressful, upsetting, distressing, desperate weeks of uncertainty about my care, what would happen to me, and how both mum and I would cope. Three weeks to sort out a 24-hour care package involving care that needs to be provided by specially trained nurses. It was a horrendous battle, and left us both physically, mentally, and emotionally drained. A time where we should’ve been making the most of our time together before her surgery was instead spent frantically sorting care packages, fighting battles we should never have had to fight, stressing over what would happen to me, and panicking about how I would manage everything on my own. It needn’t have been that way, but that’s the way it was, the way it shouldn’t have been.

So as you can see there's a huge risk when the relationship between a carer and a patient deteriorates.

Upon receipt of a request to conduct a review, the local authority must judge the merits of conducting a review. In most cases a review should be organised unless the authority is reasonably satisfied that:

• the plan remains sufficient;
• the request is frivolous;
• is made on the basis of inaccurate information, for example where a person lodges multiple requests for a review in a short period of time and there is no reason to believe that the person’s needs have changed;
• or is a complaint, in which case the complaints process should be followed .

Local authorities should clearly set out the process that will be used to consider requests.

The authority must involve the person, carer and anyone else the person requests to be involved where feasible, and identify anyone who may have significant difficulty in being fully involved in the review and when there is no appropriate person who can represent or support their involvement and consider the duty to provide independent advocacy