to young to help....

mariedonnelly
mariedonnelly Member Posts: 2
in Chat to our Helpline Team

so I was diagnosed with moderate osteoarthritis in both hips with bony spurs my hips can't fully go back into joint...

I also have Ehlers Danlos

Iwas told I need hip replacements on both hips but they won't refer me for that until I'm at least 50 I'm currently 41! I am very limited on what I can do I need help with everything and even have carers coming into help me daily.

yet all the can do is send me to phisio, that's not going to grow back cartilage nor get rid of the bony spurs and I was given a wheelchair and said that's how I need to cope until I'm 50. I refuse to use the chair I have no one to push me anyway I'm a single mum I have to use a stick to walk it's debilitating I'm in constant pain despite being on strong pain meds

they just keep saying motion is lotion! which I get but it ain't gonna grow back cartilage or get rid of bone spurs to allow my hips to actually fully go back in to their sockets are they??

Im misribble , in pain 24/7 can't sleep but they just don't care because IM TO YOUNG .

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Comments

  • helpline_team
    helpline_team Posts: 3,938

    Hi @mariedonnelly

    Thank you for your posting on the online community I am sorry to hear that you are in so much pain and that you have been told that you have to wait so long for the treatment you need. It’s understandable that you feel miserable, pain can really impact our mood especially if you are not sleeping. You may find it helpful to contact your local Patient Advice and Liaison service about this issue. They can help you with health related questions and help resolve concerns or problems when you are using the NHS.

    Also the Patient’s Association are an organisation that can help advise on such issues as getting a second opinion about your condition or how to make a complaint. You may also find it helpful to look at the NICE guidelines on the criteria for referral for joint replacement in people with osteoarthritis which states ‘do not exclude people with osteoarthritis from referral for joint replacement because of age, sex or gender, smoking, comorbidities’. I have put a link to this information below.

    You have said you have carers coming in. I wonder if you have had a needs assessment through your local council? Local authorities have a duty to care for the people who live in their area. They should be able to tell you which types of care you are eligible for and advise you on local schemes and services that can help. It’s a good idea to speak to an occupational therapist about your daily needs and the equipment available. You can reach out to your GP to refer you. They can also give you tips on ways of pacing yourself and changing the way you do tasks to make them easier. I hope that this information is helpful to you.

    What is PALS (Patient Advice and Liaison Service)? - NHS

    The Patients Association

    Recommendations | Osteoarthritis in over 16s: diagnosis and management | Guidance | NICE

    Osteoarthritis (OA) of the hip | Hip pain | Versus Arthritis

    Kind Regards

    Dawn

    Helpline Advisor

  • mariedonnelly
    mariedonnelly Member Posts: 2

    thankyou very much for that information dawn, my or has done an assessment and lve got some devises at home to make things easier, bed rail, extra Handel's, extra banister ect . and I already had a wet room out in because I have other comobiditues too.

    I already reached out to pals and they were rubbish . told me to follow the advice if I didn't use the chair I'd be in more pain and that would be brought on by myself for not using the chair 😡😡

    Iwill take a look at the replacement guidelines tho that may give me some ammo to fight the decision if I no what the criteria is and if i fit within it so cheers xx

  • KirstyAR
    KirstyAR Member Posts: 2

    Hello!

    I hope this is allowed. I found also contacting my local ICB helped get my points and complaints across.

    https://www.england.nhs.uk/contact-us/about-nhs-services/contact-your-local-integrated-care-board-icb/

    I generally need help with reaching out to places too and found working with Mind to find an advocate who wrote a letter for me etc. I'm 35 and so can absolutely relate to the being too young to be helped. I did complain to the actual practice manager also which granted me a meeting with the lead GP and sorted any gripes I had.

    Good luck warrior!

  • noddingtonpete
    noddingtonpete Moderator Posts: 1,381

    Hi @KirstyAR this is fine and thank you for posting this, some good pointers.

    Need more help? - call our Helpline on0800 5200 520Monday to Friday 9am to 6pm

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