Comments and complaints on healthcare: do you dare to share?

I am a firm believer in complaining. I’m not talking about whinging or grumbling, although I think it’s important that sick and disabled people are allowed to do that too. I’m talking about making it known when the health or social care you receive is unhelpful, lacking in respect, or in some other way poor. My most recent complaints have been to Atos, following appalling treatment at my Work Capability Assessment, and to my Mental Health Trust when they sent another patient’s confidential data to my home, but I’m actually a bit of an old hand when it comes to complaints. I’ve also had experience from the other side of the fence, dealing with client complaints as a middle manager in the social care field, which has taught me a thing or two about the art of the complaint.

The first time I ever made a complaint to the NHS was in 1995, when I was 20 years old. I had been assigned to a Consultant Psychiatrist who was more interested in picking apart my decision to get married at such a young age, than exploring my mental health issues or coming up with a diagnosis. I wrote to the hospital complaints department pointing out how inappropriate his approach was, along with other gripes, such as his refusal to call me “Ms” rather than “Miss”, and his cavalier attitude to dishing out antidepressants (“If you really do have bipolar, these’ll send you as high as a kite”). Did my complaint bring about any change in the Consultant’s behaviour? I’ll never know, although I doubt it. I do know that I was glad I’d lodged my concerns with the relevant people, so that at least if other service users made similar complaints, a pattern might be noted. The major effect my complaint did have was that I was immediately moved to the caseload of a different Consultant – one who listened properly to what I had to say, and was quickly able to make a usable diagnosis.

In 2002, I saw myself under the “care” of another Consultant in a different town. I’d been referred by my GP after a long period of very disturbed mood, including an overdose attempt in September 2001. My GP and I had tried one antidepressant after another, but my mood remained low. I had hopes that going back to a psychiatrist would mean I got specialist input and treatment to address my problem. I was very disappointed, therefore, when each appointment with my new Consultant consisted of him looking in my case file, rather than my eyes, and mumbling, “So…your GP thinks you have depression…and he’s got you on drug X at dose Y…Well, that seems sensible, so we’ll stay like that, and I’ll see you in a month.” After a few of these encounters, I went back to my GP. I pointed out that if I had a suspected heart condition and he sent me to a cardiologist, we would both expect that a thorough case history would be taken, and that some tests would administered, in order to either confirm or refine the GP’s working diagnosis. No-one, I pointed out, would think it was acceptable for a cardiologist to just go with an initial hypothesis without further investigation. So why was it considered OK in mental health?

Once again, complaining got me moved to the caseload of a better practitioner, one who looked me in the eye, who listened carefully to my descriptions of my childhood and my recent symptoms, and who got me to complete questionnaires about my feelings and beliefs. This led to me being put on a different antidepressant (a quite unusual one, which needs to be prescribed by a psychiatrist) and being offered 16 weeks of Cognitively Analytic Therapy (CAT) – a combination that led to my first and only period of sustained remission from symptoms.

As a veteran complainer, then, I was really interested in the findings of a survey by Patient Opinion. They asked around 2000 people whether they felt able to give feedback – positive or negative – to the NHS services they had used. One group Patient Opinion were especially interested in were parents, and mothers in particular. We live in the age of the Amazon and TripAdvisor review, and of information about products and services being regularly shared on sites such Mumsnet, yet parents seem reluctant to give feedback on health. The survey found that 75% of mothers had shared stories about their NHS care, but only 18% had shared their feelings with the NHS. Most tellingly, mothers were twice as likely to review a hotel as to give feedback on their health care.

Looking at the data, I’m pretty sure the reasons parents were reluctant to give feedback could easily apply to other groups:

Didn’t know how to review my healthcare	36%
Didn’t think anything would happen	31%
Didn’t think the NHS cared about their opinion	18%
Didn’t like to moan	12%
Didn’t have time	7%
Wanted to forget their time in hospital	8%
Worried it might affect their care next time	8%
Didn’t want to get anyone into trouble	4%

We don’t have a breakdown as to which speciality the mums/parents surveyed were under, but as a mother and a mental health service user, I can’t help but think why people with mental health conditions in particular might be reluctant to complain/give feedback. It’s hard to feel safe and secure in giving negative feedback if you are concerned it might be seen as being “aggressive” or “irritable” – in other words, pathological, rather than legitimate. If you don’t feel in a relationship of trust with your caregivers, it’s hard to believe the wider NHS cares about your opinion, and if you have undergone hospitalisation is a psychiatric unit (especially, perhaps, if the admission was involuntary) it would be completely understandable that you would just want to forget about it. And on top of all that, mothers with serious mental health problems are often unwilling to draw attention to themselves in any way, trying to keep under the radar for fear of Social Services involvement.

How to make a complaint

So what if you do want to make a complaint (or, indeed, give positive feedback)? You can, of course, go the standard complaints route. The most usual means of doing this is to contact the Patient Advice and Liaison Service (PALS) for the organisation that provides your care; all Trusts have these, whether you are receiving mental health, maternity or general hospital care. Your Trust website will have their PALS contact details, and you should be able to find PALS/complaints leaflets in the place where your care is delivered. Complaints about GPs should be made to the PALS team of your local Primary Care Trust (PCT); again surgeries should have posters and leaflets. If your care is provided by a Local Authority (for example, a care home or a Social Services run day hospital) your initial step is to follow the Local Authority’s complaints process; again, the council website will have contact details of who to write to. For information about taking both kinds of complaint further if you are not satisfied with the response, see here.

What should go in your complaint?

It’s vital that you make sure you understand exactly who you should be complaining to. For example, if your Social Worker is employed by the Local Authority, the Mental Health Trust won’t be able to help, even if you saw the Social Worker on the ward.

Complaints work best the more specific you can be. For example, try to be clear about:

–        Whether you complaining about a specific member of staff, or a whole service. If you didn’t get the staff member’s name, stating when and where you saw them, and what they did, can help the PALS team track them down (e.g. “the Social Worker who came to my home on 03/09/2012 to conduct an assessment under the Mental Health Act.”)

–        Whether you are complaining about specific incidents – if so, give dates – or a time period (e.g. “when I was under the care of the Crisis Team during late May 2012”).

–        Your exact concerns. For example, “The doctor greeted me by someone else’s name and didn’t know what medication I was on” is more easily investigated than, “The staff just didn’t know what they were doing.”

–        Whether you feel the care you received breaches any of the organisation’s statement of values or customer charter, again available on their websites. For example, “Your mission statement says that you value the diversity of the people you support, but the ward staff laughed when I said I was a Wiccan.”

– What you would like to see happen as a result of your complaint, for example, “I would like the appointments system reviewed so that patients are not double-booked in future.”

What if I don’t want to make a formal complaint, but still want to give feedback?

There are ways you can share your experiences (good or bad) online, avoiding what can be a lengthy formal complaints process. You can go to the NHS choices website, which (once you have registered) allows you to leave TripAdvisor style comments rating GP practices, hospitals, and Trusts, either anonymously or under a screen name.  You are asked to say whether you would recommend the service to a friend or not, before being taken through more specific questions about the quality of care you received (including free text boxes to allow you to share specific comments). The service you have reviewed get sent a copy of your comments, and you can request a reply if you wish.

If you want to give feedback completely independently of the NHS, that’s where Patient Opinion comes in. Again, you can be completely anonymous, and reviewing only takes about five minutes. You are encouraged to use your own words, and again Patient Opinion both publishes reviews on its website, and emails it to the staff concerned. There is then scope for the provider involved to post a response (much like a hotel owner responding to review on a holiday review site).

So do it! Embrace your inner moaner! Critique your care co-ordinator, discuss your day hospital, or sing your psychiatrist’s praises. Your voice could be the tipping point that makes the difference.

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