My daughter has psoriasis

[rogerb383]

my daughter has severe plaque psoriasis which she has had for 11 years and has undergone all available treatment, except for stelera injections. she went for an assessment recently and was told her score was 8.5/10, which was not quite enough to qualify for treatment in Bournemouth. She is becoming suicidile. Does anyone know if there are any areas of the country where this treatment might be more readily available, because I suspect that the Bournemouth area would prefer not to spend money on this type of treatment if at all possible.

[jiml]

my daughter has severe plaque psoriasis which she has had for 11 years and has undergone all available treatment, except for stelera injections. she went for an assessment recently and was told her score was 8.5/10, which was not quite enough to qualify for treatment in Bournemouth. She is becoming suicidile. Does anyone know if there are any areas of the country where this treatment might be more readily available, because I suspect that the Bournemouth area would prefer not to spend money on this type of treatment if at all possible.

Hi and welcome to the club and thank you for posting. It seems as if you are being given a hard time down in Bournemouth. Have you spoken to the dermatologist of her suicidal thoughts  ? If they don’t think her skin is bad enough her mental health should also be taken into account. My advice is to speak again to the dermatologist there and paint a really black picture of her mental state. As they are required to take this into account when deciding on treatments

Can I ask what have they prescribed as they don’t feel stelara is needed ?
Jim

[Fred]

Have a look at this thread NICE Quality Standards for Psoriasis it may help when talking with her dermatologist.

As for getting Stelara it is available in all areas of the UK, but I don't think trying another county would help as they all tend to follow the same protocol. You say your daughter has tried all available treatment, I take it you are meaning Creams, Light Therapy and Oral medication? If that on the case then she will probably need to fail on two Oral treatments before being considered for Stelara. If she has failed on two Oral then yes you should be pushing for Stelara or one of the other Bio's. Having said that all cases are different and it still doesn't mean your daughter will get Stelara or a Bio. It's usually used as a last option and for severe cases.

I'm with Jim if it is causing her to have suicidal thoughts then yes you should be pushing her case and very quickly. Also take a copy of this and fill it in:
Dermatology Life Quality Index (DLQI)

Please also do tell your daughter that she is very welcome to join us here and speak to others who understand. I'm not saying you can't help, but talking with others in the same boat does help. She will find a very friendly bunch of people and some that have or have had depression and suicidal thoughts. We also have a special section [Group Specific] where others are always willing to help.

I understand she may not want to join us, but I can assure you and her that she will be made very welcome and she is welcome to use your account to have a look around or have one of her own.

I have changed the subject heading of this thread to draw more attention to it.

Regards.

Fred.

[Caroline]

Have nothing more to say than Jim and Fred.

Only an extra wishing you and your daughter a warm welcome to the club.

Caroline

[rogerb383]

Thank you for your responses. I will make sure she heeds your advice. At the moment, whilst working, she is very conscious of her appearance to her work colleagues, who, although they are aware of her condition, and that it is not contagious, are not very sympathetic, and can apparently, make uncalled for comments.

[Fred]

Thank you for your responses. I will make sure she heeds your advice. At the moment, whilst working, she is very conscious of her appearance to her work colleagues, who, although they are aware of her condition, and that it is not contagious, are not very sympathetic, and can apparently, make uncalled for comments.

Unfortunately that is a common problem and people do need educating. I always remind people that psoriasis can hit anyone at any time of their life and they could be next.

She will certainly be conscious of it (I think you find all of us here have at one time or another) but opening up and talking about it does help.

A few things I would suggest:

#1 Find a work colleague that she feels the most comfortable with and get Him/Her on her side.

#2 Talk to her Boss and ask for some help in trying to explain to the other workers.

#3 Get her colleagues to have a look at our site especially these threads:
Psoriasis Myths and History
Is Psoriasis Contagious?
Types Of Psoriasis Explained

#4 See if this thread helps her feel a little more comfortable: Skin Camouflage

I'm sure not all her work colleagues are perfect and if they think for one minute they are then they should be very careful as they too could have psoriasis tomorrow. Most people with psoriasis do find that once they start sharing with friends, family and work colleagues it get's easier. You don't need to walk around with a sign, but a little sharing with someone does help.

But the biggest problem is that even if people do care and do have sympathy for someone with psoriasis they will never understand how we feel and that is where we come in at Psoriasis Club. We don't care what you look like and we are often found in [Group Specific] having fun or giving and receiving support.

Send your daughter a   from all of us at Psoriasis Club.

[jiml]

Thank you for your responses. I will make sure she heeds your advice. At the moment, whilst working, she is very conscious of her appearance to her work colleagues, who, although they are aware of her condition, and that it is not contagious, are not very sympathetic, and can apparently, make uncalled for comments.

Unfortunately that is a common problem and people do need educating. I always remind people that psoriasis can hit anyone at any time of their life and they could be next.

She will certainly be conscious of it (I think you find all of us here have at one time or another) but opening up and talking about it does help.

A few things I would suggest:

#1 Find a work colleague that she feels the most comfortable with and get Him/Her on her side.

#2 Talk to her Boss and ask for some help in trying to explain to the other workers.

#3 Get her colleagues to have a look at our site especially these threads:
Psoriasis Myths and History
Is Psoriasis Contagious?
Types Of Psoriasis Explained

#4 See if this thread helps her feel a little more comfortable: Skin Camouflage

I'm sure not all her work colleagues are perfect and if they think for one minute they are then they should be very careful as they too could have psoriasis tomorrow. Most people with psoriasis do find that once they start sharing with friends, family and work colleagues it get's easier. You don't need to walk around with a sign, but a little sharing with someone does help.

But the biggest problem is that even if people do care and do have sympathy for someone with psoriasis they will never understand how we feel and that is where we come in at Psoriasis Club. We don't care what you look like and we are often found in [Group Specific] having fun or giving and receiving support.

Send your daughter a   from all of us at Psoriasis Club.

[D Foster]

Hi Roger , it makes my blood boil when the so called consultants take these sort of decisions based on saving money but more than likely wasting money hand over fist elsewhere.
Lay it on thick but how good is your MP , we have a really good one and he has helped me with my daughters problems with the NHS.
I take Stelara and it has given me my life back so I hope that you can get it sorted for your daughter.
My daughters problems are different but we managed to get into see one of the top consultants for her problem by paying to go private and then they took her on as a NHS patient , should not have to do that but she has a very difficult and specialist problem so I don't know if it would work for P .
Best of luck and have a good look around as everything on here is from people who have the same problems and not companies or conmen trying to sell magic cures. Ask any questions you want.

[Grizzly Bear]

Evening Roger, nice to see someone from my hometown.

Christchurch dermatology was the best in the uk for psoriasis treatments mate.

I was admitted there in 2009 but sadly, due to cuts in the nhs, admissions are no longer available.

Not sure whereabouts your daughter is in Bournemouth, my old GP was in Redhill, he was bloody brilliant when it came to helping me with my P.

If you or your daughter need help, I’ll try my upmost best to help if I can Roger.

Oh sugar, almost forgot, to the loony bin mate

GB

[Raxyl]

my daughter has severe plaque psoriasis which she has had for 11 years and has undergone all available treatment, except for stelera injections. she went for an assessment recently and was told her score was 8.5/10, which was not quite enough to qualify for treatment in Bournemouth. She is becoming suicidile. Does anyone know if there are any areas of the country where this treatment might be more readily available, because I suspect that the Bournemouth area would prefer not to spend money on this type of treatment if at all possible.

Hi Roger, with all the excellent advise from the residents here I cannot add anything except to say welcome and hope that things improve for your daughter and you.



Craig