This is Care Opinion [siteRegion]. Did you want Care Opinion [usersRegionBasedOnIP]?
Care Opinion

Feeling let down

Posted By suffering2223

"Feeling let down"

About: General practices in Lanarkshire

(as the patient),

I was diagnosed with hypermobility syndrome (HMS) in 2010 but since then have failed to be taken seriously by anybody as to the amount of pain and discomfort it is causing me. I have subluxations but since nobody has seen it happen I am not believed.

I have a family history of hypermobility and other joint issues. Recently my mother and brother have been referred for assessment for Ehlers-Danlos Syndrome as they meet criteria but when bringing this up with my GP I feel ignored and said I will not be reassessed by rheumatology, despite this family history. I am only being treated for chronic widespread pain and not what is causing the pain.

My eldest daughter is suffering with joint pain and is hypermobile. I am worried about what the future will hold for us, especially as we are not being taken seriously. I need answers to be able to deal with the condition and help my daughter in the future. I feel totally let down and made out to be a hypochondriac when this is clearly not the case.

More about:
Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Kathryn Ferguson, Primary Care Division, NHS Lanarkshire 7 years ago
Kathryn Ferguson
Primary Care Division,
NHS Lanarkshire

Submitted on 31/03/2017 at 11:54
Published on Care Opinion at 12:54

picture of Kathryn Ferguson

Dear suffering2223

Thanks for getting in touch - however I was sorry to read about your recent experience with your GP. I can completely understand why you felt your request wasn't listened to or actioned.

If you would like me to pass on your concerns to the practice manager of your GP practice I'd be more than happy to assist, if you can contact me directly on 01698 858 292 or via email kathryn.ferguson@lanarkshire.scot.nhs.uk

Kind regards

Kathryn

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by suffering2223 (the patient)

Thank you for acknowledging my experience. What action can the practice manager take to resolve my issue? Due to my experiences with the practice I am now very anxious about having any involvement with them which is causing further health problems. I was promised by one of the practice GPs that I would get a referral to a specialist who would give me an MRI (after blood test results revealed problems with connective tissue), then they told me they had decided not to do it. I feel like my health does not matter to them. I have a family history of issues and if my family can be assessed and investigated, why can't I be reassessed based on this?

Response from Ruth Currie, Acting Head of Physiotherapy, NHS Lanarkshire wide, NHS Lanarkshire 7 years ago
Ruth Currie
Acting Head of Physiotherapy, NHS Lanarkshire wide,
NHS Lanarkshire

Submitted on 03/04/2017 at 14:46
Published on Care Opinion at 16:19

picture of Ruth Currie

Dear suffering 2223,

I am sorry to hear you feel let down by NHS Lanarkshire and feel you have not been listened to.

Within Physiotherapy we can offer assessment and advice on the long term management of hypermobility and would be happy to receive a referral for yourself of your daughter.

Adults age 16 or over can self refer by calling 0800 604 0001.

For children, an on line referral form can be found by following the link below. If age 13 or under, your daughter would be under the care of the paediatirc MSK physiotherapists.

http://www.nhslanarkshire.org.uk/Services/PaediatricPhysio/Pages/default.aspx

You can also access lots of helpful information and advice on the Arthritis UK website

http://www.arthritisresearchuk.org/system/search-results.aspxkeywords=hypermobility

Kind regards,

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by suffering2223 (the patient)

Thank you for the helpful response. My daughter has already been referred to paediatric physiotherapy so we're just waiting for an appointment and I will make sure I self-refer for my own issues. I was most worried about how little concern my GP had despite the family history of EDS but if we can get more information and the symptoms can be managed through physio that would be great. Thank you again.

Update posted by suffering2223 (the patient)

I tried to self refer to physio only to be told my situation wasn't something they deal with. Now what am I supposed to do?? I know I need physio and my daughter has been referred with no problems.

Response from Ruth Currie, Acting Head of Physiotherapy, NHS Lanarkshire wide, NHS Lanarkshire 7 years ago
Ruth Currie
Acting Head of Physiotherapy, NHS Lanarkshire wide,
NHS Lanarkshire

Submitted on 21/04/2017 at 12:54
Published on Care Opinion at 12:57

picture of Ruth Currie

Hi suffering223,

I am sorry to read you had difficulty self referring to physiotherapy - if you would like to contact me by email on ruth.currie@lanarkshire.scot.nhs.uk I can look into this for you.

Kind regards,

Ruth Currie

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Opinions
Next Response j
Previous Response k