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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About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
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8 Responses to Comments and complaints on healthcare: do you dare to share?

  1. Sometimes you just want to forget about it all as quickly as possible and sometimes you just don’t have the energy or strength to fight. 🙂

    • Oh, dear LOL, I’m hoping that you didn’t read my post properly, otherwise I’ve failed with getting the whole point over! I’ve addressed the “just want to forget about it” already in the body of the post… my aim was to make it as easy as possible for people who don’t have the energy or strength, something anonymous that they can fire off in a few minutes then never have to think about again if they don’t want to!

  2. chocolatewig says:

    Fantastic and informative, Thank you. I have recently obtained my notes from a voluntary stay in an acute unit. Whilst in their there were several incidents that affected me badly and I felt I was constantly battling a double standard of care.
    What I’d did not expect is that incidents I remember so clearly have been written up as if to blame my behaviour/personality and that a nurse I didn’t ever flag as being a problem has written up her notes in a derogatory, personal, and worse of all blatantly offering a personal opinion by consistantly inferring I was there because I was nothing more than an attention seeker (my biggest and most destructive fear)
    I also consistantly believe that my ability to speak up and defend myself were held against me by elements of the nursing team.

    This post reiterates my desire to try to change something. The reason I haven’t is that a complaint I made about one incident was covered up and took over a year to be answered after I contacted PALs did I receive a reply.
    So I’m thinking what is the value of just simply writing to the CEO or Chair of the trust? After all whilst in their care there was an investigation from the Care Quality Commision after two inpatient suicides and an untoward incident.
    What I want is about change in attitude on the ward to a theraputic environment rather than a bullying culture that is so normal on the ward others don’t notice it anymore,

    Ideas? Lol

  3. Useful stuff Charlotte and thanks – I am in the middle of decision-making about whether I should complain or not about my treatment by GP’s. They are cluless about mental health, yet they insist on using guess work and ‘trying’ to treat it (albeit with the wrong meds for NINE years for me!). The system sucks. The more we raise these issues, the stronger we become and sharing our issues and obstacles and health state is good for us in more ways than one.
    My heart goes out to you, I experience what you experience, although these days it is almost manageable – ( the calm before the storm? 🙂
    I can sympathise with what idiosyncratic_eye said – sometimes the will to fight disappears and more importantly it is often easier to not get upset – believe me I have buried my head enough times, but in reality you just have to face everything that life and our illness throws at us and stand up for ourselves.

    Love the blog – sorry its such a lengthy comment lol

    Lesley x

    • Believe me, I’ve had LOTS longer! Great to see you over here, always lovely to see friends from other places visit my blog. I guess my overall feeling is we have enough problems and that if the system generates more, we should make a fuss! C x

  4. geramima says:

    Great post! Sometimes wish I had thought of complaining whilst I was still in the UK, but after years of being fobbed off I just kept thinking that that was the way things were, just hoping that it would change. The only time I did physically complain (or, rather, my partner did), was after a terrible “fit for work” assessment that lost me incapacity benefit… Until the appeal ruled in my favour! All I ever wanted after a chaotic childhood was an easy life as an adult, where I didn’t & shouldn’t have to fight. But, truth is, you always have to fight a little if you want to have things easy on other levels!

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