I have finally received a response from my local CCG . However my complaint was not successful. I would appreciate any pointers in how to respond to them. I enclose an edited copy..................
.........I am writing to let you know the outcome of our investigation into your complaint about the the decision of N.............. CCG not to prescribe liothyronine (T3) in primary care.
Please accept my apologies for the delay in providing you with a complaint response and I understand that our Patient Experience team has kept you informed. I appreciate that these delays are not helpful and will have added to your frustrations and I apologise for this.
Your complaint has been reviewed by Ms.............., Senior Medicines Optimisation Pharmacist, and Ms..............., Primary Care Pharmacist, from our Medicines Management team and they have provided me with information so that I can respond to you.
I understand from your complaint that you were first referred to Dr.............. based at N................. University Hospitals NHS Trust in 2010 and that Dr............... refused to see you as he did not consider that your symptoms were related to thyroid issues. You then asked your GP to refer you to a private endocrinologist, Dr S.............based in B.............., who told that your symptoms were due to undiagnosed hypothyroidism since 2004.
In late 2020, your GP referred you to Dr.................. NHS endocrinologist based in C............... and you attend the Endocrinology & Metabolism Centre.
Dr................. started you on a trial of T3 in combination with a lower dose of levothyroxine (T4) in December 2020. However, Dr............... has advised you that he would not be able to prescribe T3 for you beyond the end of the trial, due to NICE guidance.
I understand, from additional information you have recently provided, that you are monitored by Dr.............. every 5 to 6 months and you remain on T3 in combination with T4. Dr............... has told you that the hospital and C.............. CCG is not responsible for providing the prescriptions on a long-term basis and that this is the responsibility of your GP as your prescriptions via the hospital could end at any time.
However, you have looked at the guidance and note that GPs can prescribe T3, under the direction of an NHS endocrinologist, but this does not appear to be the case in N................. and so your GP is unable to prescribe this for you.
Since starting this treatment, you say have noticed an improvement in your primary symptoms, particularly with sleep, appetite and a general improvement in your wellbeing which is evidence to you that you need T3 to function. Without T3, you took multiple medications for depression, anxiety, emotional outbursts, IBS, chronic pain and fatigue, high cholesterol, migraine and insomnia. You regularly saw your GP about these symptoms who prescribed many medications for you at a high cost to the NHS.
You say that to discontinue the T3 would mean that you would face a return to chronic illness, poor life quality and more stress and anxiety. The only other option for you would be to pay for a private prescription, which would be costly, or order T3 online through informal sources in Europe which may not be sustainable in the future. These actions would be risky and unaffordable due to your personal circumstances.
You feel that both medications should be available on prescription for you as a clinical need has been recognised by Dr..................
I am sorry to learn about the health difficulties that you have experienced and can appreciate how distressing this must be for you.
I have addressed the issues raised in your complaint below:
You feel that both medications should be available to you on prescription as a clinical need has been recognised by you endocrinologist.
Why do N........................ CCG not follow the NICE guidance regarding prescribing T3?
I understand that you have recently provided additional information regarding this statement which is that Dr.................... has clearly recognised a clinical need for T3 (in combination with T4) otherwise he would have stopped prescribing T3 as soon as blood results showed that this was not necessary. You do not have evidence from Dr...................... quoting a ‘clinical need’; however, you would hope that the fact that you are still taking T3 under his instruction would be sufficient evidence.
You say that you have enough T3 to last you until July 2022 when you will be seeing Dr…............. again; however, as you have previously informed me, there is no guarantee beyond the trial that another prescription will be allowed by C............. CCG and there never has been.
Ms...........advises that the N................... Area Prescribing Committee (NAPC) policy is ‘that T3 (liothyronine) treatment for hypothyroidism (either alone or in combination with T4 [levothyroxine]) is no longer available through the NHS. The policy does not apply to patients treated privately.’
This is a local policy which applies to prescriptions from GPs and from NHS endocrinology clinics and is based on the position statement ‘The diagnosis and management of primary hypothyroidism’ which is endorsed by the Royal College of Physicians, the Society for Endocrinology, the British Thyroid Association, the British Thyroid Foundation Patient Support Group, and the Royal College of General Practitioners.
I have attached a copy of the policy for your reference along with a patient information leaflet and I hope these documents will be helpful to you.
NICE guideline NG145 Thyroid disease: assessment and management (2019) states in section 1.3. Managing primary hypothyroidism, as below:
1.3.3 Offer levothyroxine as first-line treatment for adults, children and young people with
primary hypothyroidism.
1.3.4 Do not routinely offer liothyronine for primary hypothyroidism, either alone or in
combination with levothyroxine, because there is not enough evidence that it offers benefits
over levothyroxine monotherapy, and its long-term adverse effects are uncertain.
Ms….............has reviewed the NICE guidance and informs me that, overall, the evidence from seven randomised controlled trials suggested that combination treatment with levothyroxine and liothyronine did not offer any important health benefits compared with levothyroxine
monotherapy and was significantly more expensive.
NICE could not recommend liothyronine either alone or in combination treatment, based on the evidence available and its current list price, but agreed a research recommendation to help inform future guidance in this important area. This is why neither your GP or, as you have indicated, Dr.............., will be able to continue with your current medication past the trial end date. The oversight and governance around clinical trials mean that they can prescribe medications outside of those ‘usually available’.
You want to be able to have the T3/T4 combination prescribed following the end of the
trial so you can continue the improvement you have already had.
I can appreciate that you want to continue your current treatment regimen and recognise that not doing so will impact on the management of your symptoms but, based on the NAPC policy, NHS England guidance and NICE guidance, I am regretfully unable to agree to your request as to do so would fall outside of the policy and would not be equitable to other patients’ in the same position as you.
You note that the guidance says that GPs can continue to prescribe T3 under the
direction of an NHS endocrinologist but that this does not appear to be the case in
N.....................
I can confirm that the NAPC position statement advises that ‘the NHS will only support continued prescribing in exceptional circumstances and only under recommendation from an NHS endocrinologist after a multidisciplinary discussion involving fellow consultants’. You may wish to consider referral to an endocrinologist in N............. who can review your history and obtain information from Dr …............ in C............ to inform your future treatment and care options.
Where the CCG do not commission a treatment or service, patients can ask an NHS Consultant to complete an Individual Funding Request (IFR). Each IFR is reviewed by our IFR team and there are strict eligibility criteria with patients needing to demonstrate exceptionality and/or individuality. You may wish to discuss this further with Dr…...............as the decision regarding completion of an IFR will be his to make.
I appreciate that my response will be disappointing to you as I am unable to agree to your request to continue prescribing T3 for you at the end of the trial and I wish you well with your future treatment.
I hope I have been able to respond to all the aspects of your complaint; however, if you feel that the response does not fully address the points you have raised, please get in touch with us on......... or email …..........................
If you feel that we have addressed your concerns but are not satisfied with our final response to your complaint, we would like to take the matter further. In that case, you can contact the Parliamentary and Health Service Ombudsman (PHSO). The PHSO makes final decisions on complaints that have not been resolved by the NHS, government departments and some other public organisations. The service is free for everyone.
To make your complaint to the PHSO, go to ombudsman.org.uk/making-com... or call 0345 015 4033. It would help if you made your complaint to the PHSO as soon as you receive our final response as there are time limits for the PHSO to look into complaints.
Suppose you need any help or advice to make your complaint to the PHSO. In that case, you can obtain independent advocacy support from POhWER, and I am sending you a copy of their leaflet for your information.
I would also be grateful if you could complete this questionnaire about your experience of making a complaint with us surveymonkey.co.uk/rZY8H697
We will use this feedback to reflect on improving our complaints service.
Yours sincerely
Accountable Officer
Nottingham and Nottinghamshire Clinical Commissioning Group
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