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Refused treatment

Posted By LongcovPOTS

"Refused treatment"

About: Forth Valley Royal Hospital / Cardiology

(as the patient),

The cardiologists have point blank refused to assess and treat me for POTS (postural orthostatic tachycardia syndrome).

 Pharmacological treatment can apparently not be prescribed by GPs since they are not experienced in prescribing medication which has not been formally licensed for use in POTS. 

The medication required to treat POTS is inexpensive but requires training, experience and ongoing monitoring to prescribe safely.

This is the situation throughout Scotland.

The result is that I am unable to reduce my  symptoms and increase my quality of life. I currently have to lie flat in bed for 21 hours per day to prevent symptoms causing dizziness, mild dyspnoea syncope and prevent falls. 

I feel this is an unacceptable way to treat people in 2024.

The result is that I will have an ongoing disability and probable reduction in life expectancy for the want of medication to improve my symptoms.

The solution is to be assessed by an experienced cardiologist, prescribed cheap medication and after evaluation be discharged to continuing care under the supervision of my GP practice. This isn't difficult so I don't understand what the problem is.

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Responses

Response from Catherine Mondoa, Consultant Nurse/Cardiology Manager, Cardiology Deparment, Forth Valley Royal Hospital 12 months ago
Catherine Mondoa
Consultant Nurse/Cardiology Manager, Cardiology Deparment,
Forth Valley Royal Hospital

English

Submitted on 15/07/2024 at 12:23
Published on Care Opinion at 12:23

Dear LongcovPOTS

We are sorry to hear of your symptoms and the difficulties you are experiencing with healthcare.

As you may already know, Orthostatic Tachycardia is not typically caused by an abnormality of the heart. PoTS has many non-cardiac causes and dysautonomia (abnormality of autonomic function associated with symptoms of PoTS) has been reported in an estimated 25% of people living with Long Covid.

The investigation and initial management of PoTS can be safely done in Primary Care and does not require specialist Cardiologist input.

When conservative management strategies are insufficient, there is expert consensus agreement that medications such as Beta Blockers, Ivabradine and/or Fludrocortisone may help, provided they are not contraindicated for that person. These medications can be, and are, initiated in Primary Care in NHS Forth Valley. However, it is important to understand that there are currently no medications licensed for treatment of PoTS and therefore use of these drugs would be off-license.

Consideration of more specialist medications requires input from a specialist clinic whose staff have expertise in managing Autonomic Dysfunction. These clinics exist around the UK but not in every Health Board/Trust. The NHS Forth Valley Cardiology team do not have expertise or training in this specialist area.

Please call Caroline Logan, Person Centred Co-ordinator on 01324 566162 or e-mail address fv.patientexperience@nhs.scot if you wish to receive the PoTS BP/HR diagnosis protocol document.

We would advise you to discuss this matter again with your GP.

Regards

Catherine

Catherine Mondoa on behalf of Dr Clare Murphy, Lead Cardiologist-FVRH

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Update posted by LongcovPOTS (the patient)

In my experience, no GP I've seen in Scotland has been confident or competent to prescribe off list medication for POTS. No cardiologist has been willing to set up appropriate supervision and guidance for GPs to feel confident to prescribe medication. This is unacceptable!

I'm not aware of the aetiology of POTS and no one has been in contact with me to discuss this personally. I was told the causes are unknown.

I'm aware that medication prescribed is hit or miss and requires specialist knowledge and experience which is possessed by cardiology specialists.

I cannot get better without medication. My symptoms are getting worse. Long term excess salt intake causes high blood pressure and kidney damage. Am I supposed to damage my body and wreck my physiology in order to become unwell, before getting the treatment plan which can be prescribed before this damage occurs?

A referral to specialists with experience in dysautonomia has been suggested, but no referral has been passed on to any specialist clinic. This has never been suggested to me personally? I haven't been informed of the locations of these clinics.

I'm unable to manage or improve my symptoms because a knowledge gap exists in general practice to take over management of off-license medication. This is causing harm.

Every time my sinus tachycardia pushes me over my lactate threshold for hours at a time, my physical health deteriorates. In order to stay under the lactate threshold I am required to remain on strict bedrest. Is this acceptable? It's impossible when you live alone. I feel this is all because Cardiology have not set up an adequate supervision programme to assist GPs to manage the increasing numbers of POTS patients requiring assistance to improve and get better.

Response from Caroline Logan, Person Centred Co-ordinator, Nursing, NHS Forth Valley 12 months ago
Caroline Logan
Person Centred Co-ordinator, Nursing,
NHS Forth Valley

Submitted on 17/07/2024 at 10:37
Published on Care Opinion at 10:37

Dear LongcovPOTS

Thank you for responding to Catherine's post in relation to your concerns regarding the management of your condition, PoTS. I can hear your frustration and upset through your story and I understand how distressing this is for you.

To enable us to offer you some support and guidance, I would like to share you story with your GP Practice and would be grateful if you could contact me either on 01324 566162 or alternatively by e-mail fv.patientexperience@nhs.scot to advise which practice you attend.

Within NHS Forth Valley, we have a Long COVID Service who will be able to provide you with support, advice, assess your condition and offer self-management techniques. Your GP or any other heath care professional can refer you to this service.

I hope this is helpful.

Kind Regards

Caroline

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