Kidney Life - A Day in the Life of Jane Atha
Jane Atha, Renal Social Worker at the James Cook Hospital in Middlesbrough.
What is a renal social worker?
A renal social worker works within the team of doctors, nurses, dieticians, pharmacists, counsellors and psychologists who are involved in caring for patients with kidney disease. We work with people before they come to dialysis, those on dialysis and those who have had a kidney transplant. Your renal social worker can give advice and support on a range of personal, emotional and practical matters, for instance, benefits and finances, grants from charities, referrals to occupational therapists for aids and adaptations, liaison with housing departments, hospital discharge planning, help at home (meals on wheels, warden call systems and telephone installation), residential and nursing homes and holiday grants to name but a few!
We’ve met Brian this morning and I understand he is happy for us to cover his particular reasons for coming to you for help, so that other patients reading this who might be in a similar position to Brian will understand that help is available to them.
Yes – Brian is a patient here on the dialysis ward, who dialyses three times a week, he is not on the transplant list and has diabetes which includes diabetic retinopathy (so has limited eye sight) and relies on his wife to be his full time carer at home. Brian came to see me when he and his wife reached a point were they were really struggling to cope. So I visited them at home to have a chat about particular needs and ways they could be helped, and we have now sorted some benefits for them including a Carer’s Allowance payment for his wife. We also organised for the occupational therapist to go in because Brian was having difficulty getting himself out of his chair and getting up the stairs as his mobility is not good. Social Services have now put in a stair lift for him. I also managed to organise some respite care for Brian in a local care home near to their house to give his wife a break. Brian was a bit nervous about the respite care at first but ended up having a great time and now we organise this on a fairly regular basis for them. Brian is a real character on the ward here.
How do you get to know about patients who might need your help?
I get referrals from absolutely everywhere; the nurses, doctors, transplant coordinators, GPs, consultants, nephrologists, relations and even sometimes the cleaners here on the ward; which makes sense really because they are the ones who talk to the patients while they are working around them. Obviously they all get the patient’s consent to refer to me and it means that I might come into my office to a host of notes on my desk or someone might ’phone or email me alerting me to a patient’s potential need. I do have a form for referrals but I will follow up all referrals however they are made to me. We have a multidisciplinary departmental meeting here every Friday – so the pharmacist, the physiotherapist, the doctors, nurses and the dieticians all meet up and discuss our patients’ needs and progress, so we are all aware of what is going on.
Do most units have a social worker dedicated to the needs of the renal patients?
Unfortunately not all units have a dedicated social worker; some have more than one and for some reason some do not have one at all. This is a real pity because those patients who do not have access to a dedicated renal social worker are referred to their local Social Services department and of course renal patients have specific problems relating to dialysis which can affect different aspects of their life, and I think they need someone who really understands this in order to be able to do a proper assessment of the case.
The good thing about my job is that I can go and visit people in their home. This means that everyone is more relaxed and there is no time pressure and we can discuss all their personal worries and can get all the facts of their particular circumstances down. I often go out to visit peritoneal (PD) patients in their home to see if this is suitable for them – not for the medical side but to make sure they are coping and that their home is suitable. I can also make sure patients and their carer’s are receiving the right benefits. Because I specialise in renal patients I know what questions to ask – for instance about itchy skin, chronic fatigue – and can prepare a full assessment of their needs, and approach the relevant authorities for help. Someone without that specialist knowledge might write off chronic fatigue as feeling ‘a bit tired’ and is not going to know that renal chronic fatigue is entirely different from feeling ‘a bit tired’. I know what to look out for and what to ask. I think some people mix social workers up with the ‘benefits agency’ and we are not part of them at all. We are the go-between; it is up to us to keep up to date with what benefits are available and of any changes which might affect our patients, but we are not part of the benefits agency at all.
How do you get full assessment of a patient’s needs?
For assisting with a benefit claim, I get them to fill in a diary and write down everything that happens over say the course of a week – including when they experience fatigue, how well they are sleeping, what aspects of receiving their dialysis they find difficult to arrange, whether they can manage their weekly shopping and if they manage to keep warm. Then I can use this along with the information I take down whilst I am with them, to prepare an application for them. Then if this is turned down for any reason I will help them right through to tribunal. I am not an expert on the wider benefit availability; for instance I do not know all there is to know about pension credits, but I can refer them to the Welfare Rights Unit for these wider issues that are not specifically related to renal disease.
What is the Welfare Rights Unit?
It is a Unit that is completely independent of the Benefits Agency that gives independent advice – so you can ring them and tell them your circumstances and they will tell you what benefits you are entitled to. Almost every Council will have a WRU but the few who do not will refer you to the Citizens Advice Bureau which offers more or less the same advice. Sometimes when I have completed an assessment and I realise that there are issues outside of my particular expertise – Tax Credits or National Insurance contributions for instance – then I will refer a case to the WRU so that I can ensure people are getting the very best advice available.
What about end of life care, what is your involvement here?
Well some patients are quite clear about what they want and do not want to do and if someone has decided that palliative care is for them then I need to ensure their family are well supported and that they spend that time where they wish to be – which doesn’t have to be a hospital ward. That said a lot of patients get to know the nurses so well here that this is actually where they want to be in those final days. There are several charities, including our own KPA, who will offer help to families at this stage and I will help the family link in with one of these charities if say, they are experiencing financial hardship.
So do you generally keep up to date with which Charities are able to help renal patients and their family?
Well, I spend a lot of time trying to help renal patients at all different stages of their treatment. Generally people do not expect to become ill and consequently do not take out insurance to cover credit card debts or their mortgage and so when they are diagnosed with renal failure they find themselves unprepared. Generally speaking renal patients do not have much money. It is only a few who have taken out permanent health insurance, or who have paid off their mortgage before being diagnosed with renal failure that find their financial situation not dramatically worsened. For the large proportion the financial impact of this diagnosis represents a huge burden to them. And of course for many patients who cannot be transplanted, their capacity to earn money is severely limited for the long term. We try, with the help of one of the supporting charities or our KPA to come up with alternative career paths to help those who will one day be able to return to work.
We are currently involved with a young couple who have a mortgage. He is the kidney patient and was a builder on short term contracts. So as soon as he became too ill to work there was no fall back in terms of income. His wife is in the early stages of starting up her own beauty business but clearly not earning enough to cover their outgoings yet. So with the help of our KPA we have given him a lap-top, and assistance with course fees so he is retraining to become a Health and Safety officer with a view to applying that skill to his building site experience and eventually becoming a building site H&S Officer after he has had a successful transplant.
And what about the younger patients; are their problems very different from the older patients?
Most of the younger patients need advice regarding employment, benefits or guidance on how they might get back to work after their transplant. Many employers clearly do not know about the Disability Discrimination Act and so when someone goes into renal failure they often need help establishing their rights at work and so I sit with these patients and work out how best to support them. I am not an employment law expert but I can point people in the right direction or perhaps write to their employers on their behalf. There is a more worrying issue with the Benefits Agency post transplant than before actually. They do not seem to be aware that there is no such thing as a standard recovery period post transplant and some of the decisions the BA have made in terms of stopping benefits to patients post transplant have been ill-informed, and this is another problem renal patients face, as if they haven’t got enough to cope with.
Finally Jane what advice would you like to give to patients who feel they are struggling with their life outside of the Unit?
Please do ask for assistance and let your feelings be known.. Speak to your doctor, nurse or renal social worker. There are many services there to help, not just Social Services; counsellors, psychologists, kidney patients associations and patient support organisations. All of us are here to help.