Category: How to get what you want

Complaining about poor treatment for PGP

By Julie Hinckley

Like many women, I wasted too much time at the hands of poor physiotherapists and osteopaths who knew little about how to treat PGP effectively. I felt strongly (and still do) that these practitioners and their governing bodies needed to know how their involvement added to my lack of progress with PGP, in the hope that other women would be spared from the same fate. Also, it was important to me to release my distress and anger at having wasted a year and a half of my time, which greatly delayed my recovery. In the case of one practitioner, in particular, it was important to me to raise my concerns about several aspects of their practice so these were clearly identified, outlined and recorded.

Overall, it was very important to me to do everything in my power to prevent other women having to go through the same lack of care and absence of suitable treatment that I had experienced. It is only recently, thanks to the Pelvic Partnership helping me to find an excellent physiotherapist, that I am beginning to lead a normal life again and to recover after having PGP for so long.

Making a start

Firstly, I wrote complaint letters to each of the physiotherapists I had paid to see privately. When I received no replies to my letters, I then emailed my complaints to them, and this brought a response from one or two. Next, I contacted the HCPC (Health and Care Professions Council) to complain about these physiotherapists because this organisation regulates health, psychological and social work professionals and investigates ‘fitness to practise’ type complaints. I also contacted the General Osteopathic Council and was sent a form to complete in order to make a complaint about each osteopath who’d let me down.

In addition, I emailed the Director of Women’s Services, the Head of Physiotherapy and the Chief Executive for my local hospital to raise my concerns and to complain. I also got in touch with PALS (Patient Advice and Liaison Service) at my local hospital, detailing my complaints about my treatment for PGP. After waiting for two months and still not receiving a reply, I started making phone calls to them and this approach finally started to get things moving.

Getting some redress

A month later I received a written reply, which I felt was not enough, as I believed my complaint had still not been resolved. So I emailed again telling them this and explaining my reasons. All in all, I waited four months to receive a decent apology and a detailed response which could demonstrate to me that my complaints had not only been understood but thoroughly investigated.

Looking back, it was shocking to see how many times I had to chase things up myself to find out why I had not received replies to my complaints. However, it was well worth my time and effort in pursuing these complaints to the NHS, as I know that steps are being taken to address the treatment of PGP for other women in the future. I also know that the NHS practitioners I named have been investigated and are aware that they did not deal with my PGP effectively. The reply I had indicates that they have done a comprehensive review of their services and made significant changes, as well as addressing and monitoring the individuals involved. This feels like progress but I am still in the process of following up my complaints via the HCPC.

Why complaining is vital

I really want to urge women to complain about the poor treatment they are receiving or have received for PGP because as far as I can see, this is the only way we can help to force through changes for the better. It is also the only way to let the practitioners know that their treatment of PGP was ineffectual and demonstrate dissatisfaction with their service. I feel that if no one speaks up, these practitioners may think they are doing a good job and successfully treating women for PGP, when in fact the reverse is true!

In my case, a great deal of time was wasted and my progress towards a good recovery was considerably delayed. So I would like to spread the word to other women that if you are still in pain and not noticing any improvement after each treatment session, then do not waste any more time on that practitioner. I wish I had known this at the start of my PGP, to avoid the unnecessary pain and problems. Back then, I had not found the Pelvic Partnership and did not know what sort of treatment I ought to be receiving or that I didn’t have to put up with chronic pain for month after month. I really believed what my NHS physios told me for almost a year: “Keep doing core strength exercises and you will get better,” and, “It is down to laxity of ligaments and you will get better with time.”

I wish I had received ‘hands on’ manual treatment at each session, from a knowledgeable practitioner who was experienced in treating PGP successfully. Ideally, you shouldn’t have to look outside the NHS but I felt I had to go privately to get the treatment I needed. All I would say about going private is that having your life and your mobility back is worth it. I hope there are some decent NHS physios out there, as it is not fair that women should have to pay to get better. Indeed, many woman may not be able to afford the luxury of going for private treatment.

‘Thank you’ to the Pelvic Partnership for listening to me, supporting me and providing the information that helped me through a very difficult time.

Thank you, Julie, for your article showing the importance of making a complaint when manual therapy is not offered or the practitioner is not sufficiently experienced or proficient to really bring an improvement to mobility, pain or freedom of movement after each treatment session. It is very difficult to have the confidence or energy to complain when you are feeling vulnerable, in pain and when you have limited mobility. If you can, get in touch with the Pelvic Partnership and ask for additional support from family and friends (who can also accompany you to increase your confidence).

Are you getting what you want?

By Madeleine Speed

Exploring techniques and approaches that could help

On 23rd February 2016, NHS England announced the outcome of the Maternity Review 

which has been taking place over the past year. We contributed by attending the Birth Tank event as well as one of the listening events, and raised the profile of Pelvic Girdle Pain (PGP) with the review team. We are really pleased to see the focus on choice in the final report, and hope that this will improve things for women with PGP. A pilot project will start later this year ahead of a full roll-out in 2017. The aim is to improve safety and enable women to exercise real choice about their pregnancy and birth, particularly about where to have their babies. Although current maternity services are already underpinned by a policy of encouraging choice, evidence suggests that women are not routinely offered the range of options available and this certainly seems to be reflected by the statistics where a large percentage of women are giving birth within hospitals. In 2014, of 664,543 births in England, 87% were in hospitals, 11% in midwife-led units and 2% at home, although almost half would have preferred to give birth in a midwifery-led unit and 10% would have preferred to be at home .

Do you feel you are getting what you want?

This news item about encouraging choice prompted the topic of this month’s blog. The NHS has a policy of women-centred care and this should be apparent to us as women with PGP both in terms of seeking treatment for it but also in the support we receive to exercise choice in where and how we give birth to our babies. Do you feel you are getting what you want?

Sometimes it’s easy to get what you want: a GP appointment is offered at exactly the date and time you requested, the book you’d like suddenly becomes available at a sale price, or the plumber responds immediately to your call to fix a leak. Sadly, it isn’t always that simple and it can feel that, on balance, the disappointments outweigh the successes. This is where taking a step back can help and a new focus on factors that might influence the successes over the setbacks. If you compare the occasions when there’s a successful outcome concerning your PGP, with times of failure, you might see a useful pattern. There may be ways for you then to exert an influence over events so that the successes outnumber the failures. You might find that all it takes is a slight shift in technique, approach or perspective to get you what you want more often. So read on, compare notes and see if this tactic can work for you in your quest to get what you want with your PGP.

Taking responsibility

There are some wonderful healthcare professionals out there. Sometimes it is hard to find them and many of us may have encountered one or two who haven’t been well informed about PGP and how to treat it. We may not be responsible for how professionals respond to us but we can take responsibility for acknowledging that something isn’t right with our health and that we need to be directly responsible for taking action individually to get help.

With PGP, what we say and do can often reveal whether or not we are really taking responsibility for our health. Are we prone to just grumble with frustration or to use that dissatisfaction to drive us on to finding a way forward? For example, we could be proactive in sending off for information, finding out about the condition, talking with friends, family or healthcare professionals we meet about it in case they know anything that would help. It can be time-consuming and difficult at times but this can also be a source of great satisfaction when you know your efforts have delivered a little progress. The fact that you have got this far in reading the blog suggests that you are motivated to push for more help (and we hope that exploring the Pelvic Partnership website, as a further step to demonstrate your persistence, will find you both support and up-to-date information about PGP).

Getting what you want and need from your care

What experience do you have of approaching a healthcare professional for help in combating PGP? GPs and midwives can make referrals to an NHS physiotherapist for an assessment and diagnosis of PGP. When PGP is diagnosed, the physio should then outline a proposed treatment plan to you which ideally includes the use of ‘hands on’ manual therapy. Within the Pelvic Partnership team, some of us found relief from PGP symptoms with our first contact with a physio (or an osteopath or chiropractor) while for others it took a while to find one who seemed to be ‘right for us’. You will want to find someone who knows their facts and also has a good ‘bedside manner’. However, even if this person seems well-informed, if they don’t appear to be listening to you or responding to what you ask or say, then they may not be the best person to help you get what you want. If you need help, don’t hesitate to contact us via our telephone or email helplines.

Exploring techniques and approaches that could help

In part one of this blog (see below), the focus was on looking at how to take a lead in finding what you want and need to recover from pelvic girdle pain (PGP) symptoms. In Part 2, the emphasis is on what questions to ask frontline healthcare professionals to get what you want. This is followed by a look at how to frame the questions that might prompt a positive response.

What are some questions to ask?

If you are new to the symptoms of PGP, then have a look at the Pelvic Partnership website and particularly the first three sections: ‘What is PGP’‘Symptoms’ and ‘PGP is treatable’. There’s also a really useful ‘Stickmum’ leaflet that Pelvic Partnership launched at the end of last year which you can download free from the website and perhaps show your GP or midwife. These will give you some useful background information. Then it is worth noting down your symptoms and some questions you might want to ask your GP or midwife ahead of seeing them as these are the key healthcare professionals who can get you a referral to see a physiotherapist (physio) on the NHS. Before you see a physio, if you don’t know about their experience of treating PGP you may want to ask:

  • I have: lower back pain, (or pain in the front of my pelvic), difficulty walking, pain when turning in bed, etc. Have you ever seen this before?
  • Have you ever treated this before? How many times?
  • Will it be possible to have an individual assessment of my condition?
  • Do you offer manual therapy to provide relief?
  • How quickly am I going to start to improve?

Keeping the questions and the preamble short and simple will make the most of the time with the practitioner. These questions can also be used if you want to try a private physio, osteopath or chiropractor through a sports injury clinic or perhaps a private women’s health clinic. Have a look at our ‘What to expect from treatment’ page on the website as this shows what you should expect from an assessment. You can ring ahead before you actually book an appointment and ask to speak to one of the physio team and see if their responses tie up with the key information on the Pelvic Partnership website and in the literature. If you aren’t happy with the answers to your questions, you may decide to choose a different manual therapist .

If you are in the middle of some treatment and feel you are not seeing improvements after a number of treatment sessions, you have every right to ask questions. You might want consider the following questions:

  • I am concerned that there has been little progress so far; can we discuss this?
  • What are my options? (This shows that you have a choice and implies that it is your prerogative to choose).
  • I’m feeling… (as no-one can counter that with “no you are not!”) and, I was wondering, what can you do for me?
  • When you raise your voice like that, I feel uncomfortable, could we discuss…what do you think could be done?

Help inside or outside the NHS?

Another question is whether to look inside or outside the NHS for help. As the NHS is free to (most of) us, it is a good place to start and there are some excellent physios within the NHS. However, a downside is that sometimes women find the waiting list for NHS treatment is not just weeks but months and in that time PGP symptoms can become worse. In some areas women are invited to learn about PGP in a group session and need to specifically book a subsequent one-to-one session for an assessment and diagnosis of their PGP. In the past, exercises alone were the basis of treating PGP within the NHS. The Pelvic Partnership believes that treatment is more likely to be successful if it features manual therapy to relieve ‘stiff and stuck’ pelvic joints and asymmetry of movement of the pelvic joints. Exercise can be useful to strengthen core muscles (to keep the pelvis aligned and functioning well) once manual therapy has helped to normalise joint movement and reduce pain.

There are some wonderful professionals in the NHS, so it’s worth looking at the NHS for help ahead of searching for private treatment. If you are very close to your due date and time isn’t on your side, you could always ask your GP or midwife to refer you and to see if there’s a cancelled appointment before looking for other options. If you haven’t found relief from PGP symptoms within the NHS, is it worth looking outside? Again there are pros and cons. Private manual therapists (such as physios, osteopaths and chiropractors) charge a fee for treatment. Whether you opt for manual therapy through the NHS or to a private practitioner, it is important to keep checking whether or not the experience is helping. You should come out feeling better than you went in (although some people do feel initial soreness after a session but this should settle down within a day or so). Even if progress is slow, you should feel some difference after treatment such as freer movement, greater mobility and less pain.

Whoever you see, it is important to give the practitioner a chance. With PGP, just one session of hands-on treatment to address a misalignment may not sort out the problem, so having realistic expectations can help as can checking the literature on the subject, making contact with our support helpline (via phone or website) and generally giving an appropriate length of time for the improvements to appear. Overall, there should be steady improvement in your symptoms, and if this doesn’t appear to be happening, you have the right to question the care and lack of progress.

Confidence in asking

Having the confidence to speak out can be very difficult and particularly when you are feeling tired, frustrated and in pain. Noting down some questions and anticipating responses from healthcare professionals can help you to prepare what to say. Sometimes it gets easier to ask questions if you keep practising so that, over time, sheer experience will help you to be more assertive and confident. However, if you feel that your confidence is undermined because you are in too much pain, or feel too upset or too vulnerable to do the asking on your own, then why not ask someone to come along and support you? Taking someone with you to act as your advocate can help you to confront a situation where you may otherwise say nothing. A friend, your partner or your mum could accompany you, so that if you are asking the questions, they can back you up or raise the questions you don’t feel confident to ask. Sometimes, just having someone with you can help you to feel empowered to ask the questions you want answered.

Some approaches can work better than others

Your approach to asking a question can sometimes influence how you are answered. For example, talking to someone you see as an authority figure by starting a conversation with “Sorry to bother you but could you…” which suggests that we are not worth seeing, treating and so on. Similarly, if we experience frustration and counter it by becoming angry, the anger is unlikely to be helpful if we are short or rude to someone while trying to obtain information or a service from them. This frustration is particularly understandable if we have had a lack of success in asking for a referral, the kind of treatment or birth we want, for example, and quite rightly feel a strong sense of injustice. However, becoming cross or irritated seldom works in getting a positive outcome from the person confronted at the time. In fact, our experience of venting anger will recall many more negative responses than positive ones. However, anger can be very useful because it can drive your determination to get answers and results. So, even after a number of setbacks, it can help you to keep looking for the right person to help you to overcome your PGP.

How did you find the right person and quickly?

It may not be easy to find the right person straight away but you will need to be persistent and to keep trying. Sometimes the help can come from places you might not expect at first. For example, excellent care for PGP can arise from sports physios rather than through the more obvious route of through a midwife to a physio attached to the maternity hospital. Similarly, keep taking opportunities to ask family, friends and any health professionals you meet about anyone who has had PGP or is used to using manual therapy to treat it because their knowledge and experience could prove useful to you. If you have had a couple of false starts, it’s worth ringing the Pelvic Partnership helpline and leaving a message via 01235 820921 as we may have information relevant to where you live.

Exploring techniques and approaches that could help

In Part 2 of this blog (see below), the focus was on what questions to ask frontline healthcare professionals to get what you want and starting to frame questions that might prompt a positive response. In Part 3 we look at approaches and techniques that may help you to realise your goals concerning pelvic girdle pain (PGP) particularly if you are currently expecting a baby.

What will help me get the kind of birth I want?

The Pelvic Partnership believes that women have the right to make their own informed choices about how and where to have their babies and this is certainly a right that the NHS upholds. PGP symptoms can result in pain, limited mobility and difficulty opening your legs. There are ways to reduce pain and avoid putting further stress on painful pelvic joints. Although PGP does require careful management during labour and birth, this doesn’t necessarily limit your options, they are just altered. There are lots of ideas for ways to give birth with PGP which you can discuss with your midwife. Having PGP should not prevent you from considering giving birth at home, in a midwife-led unit or a hospital – it should be about what feels right for you. It’s worth discussing the options with your midwife before choosing so you know what is involved. Do make time to talk to friends, family and professionals as well as to research the options available to you. By being aware of your needs and the choices open to you, you are more likely to find a way forward that suits you best.

Writing a birth plan

A birth plan can be very useful in helping you to get the kind of birth you want. It can be helpful while planning what sort of birth you want, to pull together information about PGP (to avoid compromising your pelvis). It can then be used by those who are caring for you in labour and to guide your midwife and carers about your preferences. The birth plan can take any form and work best if they are easily read, specific and not too long (click here to see an example birth plan) . Discuss your ideas and options with the team looking after you so everyone is clear about them ahead of when you go into labour. For example, discuss any strong views on what you want or don’t want whilst still maintaining some flexibility to adapt to the baby’s needs as labour progresses (because births are sometimes unpredictable and don’t always go to plan). Include details such as any pain relief you want, the extent of your ‘pain free gap’ (ie when opening your legs), whether you would prefer to give birth ‘on all fours’ or on your side, or have a water birth, whatever feels right for you. Include details about the help and support you will need after you have had your baby. If you are in hospital, you may need to ask for specific help with your mobility, feeding your baby, moving around the ward or feeding yourself. Get extra copies made so you can have one in your notes, one each for all key staff in the team and a few extras in case there is a change of staff.

If you don’t feel you are being heard or supported

You and your midwife will both want the same goal: the safe birth of a healthy baby. However, if you find your midwife doesn’t seem to be sympathetic to you needs or supports your birth choice, then you may want to call on the services of the Supervisor of Midwives (SoM). SoMs are there to ensure that care is safe and woman-centred. Their role is independent of the hospital in which they are employed with the aim of ensuring that midwives are following the Nursing and Midwifery Council rules and also following national guidance as well as making sure that care is centred around a woman’s individual choices. A SoM is on call for every maternity service 24/7, and is available both to you and to midwives. You can call her to help with discussions about birth options with PGP between you and your midwife at a very early stage or to come and help if you are having difficulties in getting heard when you actually go into labour.

Who can you turn to when things don’t go to plan?

Sometimes, despite good birth planning and everyone’s best intentions, emergencies arise and things don’t go well. These situations can be very difficult for all involved and you may find you need extra help and support afterwards. There may be physical issues for you to manage or emotional or psychological factors and with all of these, it is possible to find specialist support groups and people who will listen and help you – both within the hospital or outside. Whatever has happened, you may need to speak to someone straight away if you felt you haven’t been listened to or have not received the good care you were expecting.

Most hospitals have a counsellor on site so you can talk things through although you may have to wait for an appointment. You might also want to speak to The Patient Advice and Liaison Service (PALS) which offers confidential advice, support and information on health-related matters including how to make a complaint. You may feel that you want to raise your concerns with the Clinical Commissioning Group (CCG) for your area and also the Chief Executive of the hospital. It may be that through no-one’s fault, you have had a traumatic birth experience and would welcome one of the team to go through the notes about the birth with you, to answer any questions. Most hospital have a Birth Afterthoughts Service (although it may have a different name) and you can get in touch to go over your hospital notes, to help you understand what happened and to assist you if you want to plan another pregnancy but are worried about how to cope with going through pregnancy and birth again. There is a wealth of organisations geared to help with coping if the birth did not go to plan (whether you had your baby at home, in a midwifery unit or in hospital); the Pelvic Partnership website includes a number which members have found particularly useful: www.pelvicpartnership.org.uk/links

Where to go from here?

There’s no doubt that ‘Getting what you want’ can require a large amount of effort and time to find people, information and resources that can help you to assess, treat and manage your PGP, give birth and then progress towards a good recovery. However, once you have gathered the information you need to feel comfortable about who to see and what to ask them, you should feel more confident about getting what you want. Once you are well informed about your options, there really are approaches and techniques you can adopt to nudge you away from failures and towards greater opportunities for success.

The next step in achieving greater success with your PGP symptoms is to have a good look at the Pelvic Partnership website and to see the topics we have made available to help you. Then you might want to send us a question via our telephone helpline for one of our team of volunteers (who have personal experience of PGP) to get back to you with any information or support you are seeking regarding your PGP.

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The Pelvic Partnership consists of volunteers who have had Pelvic Girdle Pain (PGP) and wish to support other women. We aim to pass on information based on both research and the experience of other women with PGP. We are not medical professionals and cannot offer medical advice and the information we provide should not take the place of advice and guidance from your own health-care providers. Material on this site is provided for information and support purposes only.

   © Copyright Pelvic Partnership 2018. Website content reviewed and updated: 2016 - 2017

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