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Supporting people affected by Charcot-Marie-Tooth disease.

Navigate through the NHS

This seems like a good place to start a conversation about both your rights as a patient and also how to get the best out of an encounter with a healthcare professional in the NHS. The core principles guiding the NHS – the right to receive comprehensive care, available to all; irrespective of race, gender, age, disability, sexual orientation or belief; with access based on clinical need, not on the ability to pay, make it unique amongst health systems around the world.

Healthcare works most effectively when patients and healthcare practitioners – whether GPs, nurses, physiotherapists or pharmacists work together to the benefit of the patient, and it is important to emphasise that good healthcare is a collaborative effort. Most patients want to be active partners in their care: healthcare ‘done with me’ rather than ‘done to me’.

That said, sometimes this can seem like it is not the case. Many patients report that they do not have this relationship with their GP, feel that they are not taken seriously, or that their GP may not have the skills and knowledge to manage rarer conditions like CMT.

Remember most people who become GPs are people dedicated to trying to help the patients they serve. You don’t go in to general practice if you don’t want to help people. But they are all human.  They have good days and bad days (and good and bad bits of days) and as individuals there are areas where our knowledge and expertise is greater than in other areas. Though one thing is for absolute certain – they cannot know everything about everything.

During the course of an average day your GP will be directly consulting either face-to-face, on the phone or email, with anything up to 60 patients, making time the most valuable commodity we have. So it can really help to have a plan of the things that you would like to cover during your consultation to get the most out of the time available with your GP, whether it’s writing down a list of things you would like to discuss, bringing along a friend or family member or checking what’s been covered so you leave the consultation fully understanding what the plan and next steps are. The RCGP have produced a useful patient guide to GP services that has other useful tips to getting the most out of both your consultation and the GP practice itself.

When considering rarer conditions such as CMT it’s probably fair to say that many GPs won’t have a great deal of experience and knowledge of patients with the condition, but it can certainly be worth asking around at your practice – you just might be surprised. GPs, like all other healthcare professionals, learn the most important lessons from the patients we see, and being involved in the care of someone with a rarer condition is a steep learning curve, but that experience is carried with us throughout our careers. Remember also, that whilst healthcare professionals can be experts on particular disease areas or parts of the body, you are the expert in you. So if you have access to useful sources information or can highlight good areas of practice, please let your GP know.

Good relations and communication between you and your GP are essential. You should be happy with your GP on a professional and personal level, which will require thought, consideration and patience from both of you. If you feel that the relationship you have with your GP is simply not working, for whatever reason, I would urge you to exercise your right to choose another GP, either within the same practice or at another practice. Although for most people this choice is currently limited to a practice near where they live, there are almost ten thousand GP practices in the UK with around sixty thousand practicing GPs, so hopefully you should be able to find someone that you can develop a working relationship with.

The NHS choices website will help you find a local GP practice and has a really useful page on choosing a GP. There is also the opportunity to leave feedback (anonymous or otherwise) about the service you have received, both good and bad. Good practices take this feedback very seriously and will try to respond constructively to negative feedback, but also find positive feedback really rewarding and motivating. You could also consider joining the patient participation group at your GP practice to really help shape the services that are provided. Other forums are available such as Patient Opinion that facilitates dialogue between patient and health service providers to improve services.

Within the NHS constitution there are other important legal rights – that of choice and of complaint and redress. Choice of healthcare practitioner, choice of treatment, choice of location of care and the right to say no to treatment if you wish. You have the right to have any complaint you make about NHS services acknowledged within three working days and to have it properly investigated. And the right to be kept informed of progress and to know the outcome of any investigation into your complaint, including an explanation of the conclusions and confirmation that any action needed in consequence of the complaint has been taken or is proposed to be taken.

What about seeing a specialist? In the NHS you are entitled to ask for a referral for specialist treatment on the NHS and to do this you will need to see a GP at your registered practice. This is because all your medical records are held by your GP and even if you are referred to see a specialist your GP remains responsible for your overall care. However, the decision whether or not a referral takes place will depend on what your GP feels is clinically necessary in your case and also who might be the most appropriate specialist to see. If you feel that you are being unnecessarily prevented from seeing a specialist when it is necessary, then it’s important to bring this up with your GP or one of their colleagues at the practice to understand the reasons behind the decision and agree a way forwards.

If you do need to be referred to a specialist, you can choose to be seen at any hospital in the country as long as it is offering a suitable treatment that meets NHS standards and cost.

You can ask your GP or another healthcare professional for a second or further opinion (an opinion about your health condition from a different doctor). Although you do not have a legal right to a second opinion, a healthcare professional will rarely refuse to refer you for one. What is vitally important when you are seen by a specialist is good communication between all parties – you, your GP and the specialist, so that everyone involved in your care is fully informed of what’s happening to you.

So, to conclude, good healthcare is a team effort with patients and healthcare practitioners working together to get the best possible outcomes. In the NHS patients and the public and staff have rights and responsibilities, and above all choice, to get the best care possible.

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