Bee72


#1
This week my husband has been newly diagnosed with Parkinson's and the neurologist wrote out a prescription there and then. However when we read through the details about Sinemet Plus contained within the packet it specifically said that it shouldn't be prescribed for anyone having had skin cancer, which my husband has had. We gave this information to the neurologist.

#2
Hello Bee72 and a warm welcome to the forum,
I was diagnosed 8 years ago and I have been lucky enough that my condition has progressed only slowly since then. I take Sinemet plus and I know that I'd be worse off without it.
This forum is full of warm hearted knowledgeable people who are living with Parkinson's and can help you with most things that you might need or want to know.
Diagnosis is a shock and I well remember coming out of the neuro's office in a daze. I understand why you are concerned about skin cancer risk. I'd suggest that you give your neurologist a call and ask to discuss the issue.
If that does not work you could try looking for a Parkinson's Nurse Specialist (PNS). If your local health team has a PNS it is well worth getting in touch.
Finally the Parkinson's UK helpline can advise. The phone no. is at the top of the page. The helpline team can point you in the right direction and/or can put you in touch with a PNS.

In any case I hope you keep posting and that you find as much support in this forum as I have done

Elegant Fowl

#3
Skin cancer is a multi-faceted problem. I think each case must be taken by itself

#4
Bee72

Welcome to the forum with such a worrying first post.

Get back to your neurologist PDQ and then change to another.If they were unaware of this connection then they should have been, you having told them.

#5
Dear Elegaant fowl.: you say to Bee72 " Give your neurologist a call and sak to discuss.." !!!!!!! which planet are on..???!! I find this an amazing inapplicable deceitful remark....you try it mate and see if you can just pick up the phone and call the consultant Neurologist straight...! when i call my ,so called (specialist PD nurse,I get a recorded message, and she calls me back about week later..! :rolling_eyes:

#6
Dear euglenviridans
Welcome to the forum. You will find this place full of warm and gritty people who have lived with Parkinson's, some of them for many years, and are happy to share their experiences. I hope you find this forum as helpful and supportive as I have done.

Elegant Fowl

#7
Dear elegant fowl...thank you for your reponse and yes am looking forward to reading points of view,remarks, news, views,support and general information...its important to maintain transparency and accurate propagation of information that is devoid of politcal correctness, or superficial lip service. yes I am "gritty" and grumpy git for good reasons....people with PD are not managed effectively : for example : the medical guidelines (as endorsed by The British Medical Association) stipulates that the FIRST consultation should be CONSULTANT LED....how many patients get seen by a CONSULTANT NEURO DURING the first consultation..? ..very few...the majority would be seen by less experienced/trainee/ junior/non specialist doctors, because the consultatnt is busy attending (Private) patients at other hospsitals/ clinics...!! May I ask : Is Parkinson UK aware of this, and what is it doing about this fact..??:disappointed:

#8
true...i didnt see a consultant until my third appt and that was only because the pd nurse suggested i specifically request to see the consultant. that was the only time i have seen the pd nurse in 7 years!

#9
I was fortunate to see two consultants on the same day when I was diagnosed. My initial consultant requested that I was also seen by his colleague at another hospital. I also see my consultant at every hospital appointment and he has been very supportive.

#10
Hi euglenaviridans

Echoing elegant fowl's sentiments, welcome to the forum. I've talked to Suma in our Professional Engagement and Education team, who said the following in response to your question above:

==

The fact that people might not be seen by consultants when they are diagnosed is something we are aware of. The guidelines you mentioned (the NICE guidance that came out in 2006, which is probably quite familiar to many forum members) stipulates being seen by a 'specialist with expertise'.

The term 'specialist' could be interpreted in different ways, but we certainly advocate that diagnosis should be made by someone with the necessary knowledge and expertise required to make that judgement. This is something that our regional teams promote when working with local services.

From talking to our members, we are very clear that the overall experience at diagnosis needs improving - and we're doing more to raise awareness with both neurologists and geriatricians of the importance of as positive an experience at diagnosis as possible to help people come to terms with their condition. This would include signposting to Parkinson's UK at an earlier stage (we know that people often find out about the support we can offer much later than necesary, which means that they've often had to struggle by themselves for quite a while).

We're developed a specific resource to support us with this work and it is something our regional teams are using in their local areas.

==

I hope this helps.

Sharon

#11
Dear Sharon : many thanks for wellcoming me as a new forum member and thank you for your explanation . I am glad that we all agree on the importance of the prompt and accurate diagnosis of PD.To many people,being told of PD for the first time could lead to a shock and emotional trauma and a mixture of emotions.Sometimes,but not always,the diagnosis is not absolutely certain because of complex variations of PD illness...e.g Essential Tremor may mimick PD but is not PD. Or " Parkinsonian" Symptoms and signs (Parkinsonism) but not actual PD. What complicates matters further,is the depressing statistics that , on post mortem examination, it is found that one quarter of PD sufferers had infact other brain pathology ( ref.Houston-Merrit- Johns Hopkins Uni- U.S.A .Dept.of Neurology). so the first appointment ( assuming the GP suspected the diagnosis of PD,and as a good doctor, practicing good standard of clinical medicine and not just being a business manager,had made a specific referral) must be with CONSULTANT Neurologist,preferably,but not necessarily ,with interest in so called "movement disorders". Referral to "(Neurology Team" ) is not good enough. Being seen for the first time by a PD " specialist Nurse" is NOT good enough, for the above mentioned reasons. Being seen by a junior doctor for the first time is not good enough, even if he is labelled " specialist with expertise" as losely labelled by the NICE organisation is not good enough ( by the way Nice is a medico-political establishment that puts " cost effectiveness" way above genuine human needs..).No doubt,the paper pushers and box tickers will argue back, that there are not enough resources to guarantee that every patient be seen by the consultatnt at the point of initial diagnosis.My answer to that is that consultants should seperate their private work from NHS work, but Alas,the private sector has been scrounging on the NHS experteeism for decades. In conclusion,may I suggest that Parkinson,s UK starts an active educational programmes for GPs to be more proactive when they refer patients suspected of PD to demand (on their referral letter) a first consultation with a specific Consultant Neurologist.Otherwise it would be acceptable for follow ups with other members of the( Neuro Team )of the local hospital.....Best regards, and many thanks for your intuitive attention.

#12
Hi euglenaviridans,

Just to let you know, we’ve worked with British Medical Journal (BMJ) Learning to develop online training for GPs about Parkinson’s and one of the modules looks at initial assessment and onward referral (the other one is around non-motor symptoms).

BMJ Learning should be familiar to all GPs as it covers a range of health conditions, but please feel free to pass this information onto your GP. You can find more information at http://www.parkinsons.org.uk/content/online-training-gps

Suma