Professionals whom don't understand.

[KarenOR]

Hi I've had alot of criticism from some childrens social services about Antiphospholipid syndrome. They've been very negative and don't understand that both my children know alot more about my condition than anyone as they live with me, they keep telling me it's not appropriate for them to know, my son is an adult and my daughter is 14. But don't get that if I'm took ill they are normally with me and would have to give over the drugs I can not have. I have had criticism that my daughter is a key holder even though she's still at school. She leaves her key at the front desk, for emergency services to pick up, I have two other key holders.

Though now my key holders and emergency services are unable to get in my home if needed at night as these childrens social service have told my ex where I live, so my security has had to be stepped up.

I have a lawyer involved, my daughter is 14 and is very worried for my health, she says these people haven't stopped to think that their actions are causing me to decline in health. She's watching her mum to struggle with joint pain, chronic fatigue, vertigo alot more, I've had to have two months off with stress that sent my INR readings worrying low then worrying high.

How can I teach these people to understand that it's their involvement has had a worrying knock on effect on my health?. My GP has sent them a pack and so has my social worker. Still can not get through to childrens social services, they've buried their head in the sand. And removed my daughter out of my care using my condition against me in a court of law.

[Lure2]

Hi Karen,

I understand that you have a very difficult situation and that your INR (I think it was under an INR of 3.5 one year ago) is quite too low and you can not keep it in range and stable because of stress and too less bloodtests.

I wish I could explain that it is vital that your anticoagulation works well when you have Hughes Syndrome/APS. You do need an Expert of autoimmun illnesses (probably a Rheumatologist or Hematologist). You should have a selftesting machine and test often or change from Warfarin to LMW Heparin which may be easier for you to handle.

I can understand that you have enough to think about the social service but all the same you must talk to your GP and let him refer you to a Specialist. You really need help as this involves your whole family. I live in Sweden with another system but I quite understand that you really need help. You and your children.

But - if you could get A SPECIALIST and the RIGHT ANTICOAGULATION you would feel much better and life should be easier for you in contact with the social workers as they do not understrand how Antifosfolipidsyndrome affects a person. We understand here as so many of us have had to fight for the right Doctor and the right treatment.

I wish you luck and help from someone very soon!

Kerstin in Stockholm

[daisyd]

This probably won't help,but their are key code boxes for emergencies, the key goes in the box and only people you want have the code

[KarenOR in reply to daisyd]

Hi the the key code box won't work as my house is dead locked due how violent my ex is. I have a key box and three key holders. Thank you.

[MaryF Administrator]

How stressful for you, and how awful for both yourself and your daughter. I will at this point ask how your consultant - your Hughes Syndrome/APS specialist is looking after you. as you may need a medication review if your INR is not behaving? Also when did your vitamin D, B12 iron and Thyroid last get checked?

I see the bit about your ex, no doubt that is another very stressful component in this. Do you have a family member or trusted friend that could move in with you at this time as support and to take the pressure off? Also your lawyer will fight for you, I now it must be difficult, but you have to focus on any visits with your daughter that you are awarded and make them as good as they can be. Have you contacted your MP?

All the best to you. MaryF

[KarenOR in reply to MaryF]

My Lawyer has sent a pack to court Regarding my illness, the judge is fully understanding.

Though made my specialists smile as these childrens social services told me to organise my illness like I can book in when I'm ill.

They are critical of me coming home and going straight to bed when I get home from work. They can not understand chronic fatigue isn't a sign of laziness.

Bullying someone whom is ill isn't funny and there is no higher organisation that the complaint can go to because fitness to practise doesn't want to know, even though these people are actively discriminating against a persons illness to fund the childrens social services through your child. It costs over £1200 a month to keep a child in care.

There are child younger than my daughter whom look after their parents.

[HollyHeski Administrator in reply to KarenOR]

Yes they are bullies, the worst kind.

Did you get a medication review that Mary suggested? What does your specialist say about your fatigue?

Kirsten has suggested reducing your work hours, this is a good idea, as we all tend to pack too much in our day and our bodies retaliate! All this stress doesnt help either...

I wish you well and hope your legal team success.

[KarenOR in reply to HollyHeski]

I've changed my working hours to get more rest. My health team have wrote reports too.

[KarenOR in reply to HollyHeski]

My fatigue is due to unnecessary stress. B12 has been checked.

Joint pain is also making me really tired too

[Wittycjt in reply to KarenOR]

Have you asked about taking low molecular weight injections. I take these twice a day and no longer have to be concerned about my INR. It seems this could be a possible solution, although it won't help with the lethargy. But it could help reduce your stress! Good intentions....

[KarenOR]

Thank you I've been to my MP he's not that helpful.

Children's social services needs to start to listen that they are doing the harm not us.

[KarenOR]

Dear all today the social worker used my illness against me again. I give up trying to make them listen.

[Lure2]

Hi Karen,

I understand it must be difficult, very difficult, for you with this whole situation and your daughter at a very sensible age.

Could you reduce your working hours if you talk to your Specialist? That way it would be easier to rest and take care of yourself as to your Warfarin and changing INRs. Also your daughter should be happy when you feel better as she is worried for you.

I cross my fingers that your life will improve in all respects!

Best wishes from Kerstin in Stockholm