Parkinsons' nurses

Hi, I am new to the forum and have a question. Can anyone tell me what the function, role or purpose of a specialised Parkinson’s nurse is supposed to be? I badgered for a year for my partner to be refered and we saw he in January. No notes, wrong consultant and spent tge whole session asking why he didn’t want to take the drugs. Saw her again this week, same questions re drugs and told him to use a laser pen! I dispare!!!

Oh dear apologies for the typo’s.

Hi @Mitch1,

Welcome to the Parkinson’s UK forum.

To answer your question, Parkinson’s nurses provide expert care because they only work with people with the condition.However, a large of their role is helping people to manage their medication, so they get the best results and fewer side effects. We have more information on our website about this which you can find here - https://www.parkinsons.org.uk/information-and-support/parkinsons-nurses.

It’s a shame that you wasn’t happy with the Parkinson’s nurse that you saw, if you contact our confidential helpline, on our advisers can arrange for a Parkinson’s nurse to give you a call within 24 hours. Give us a call on 0808 800 0303 or email us at [email protected].

Best wishes,
Reah
Forum Community Manager

In what way are they experts? Do they receive training before taking up their role??

Our local PSN is less than cooperative in managing medication as they won’t go against a DR. who is not even a neurologist and take on board family members concerns, is off work again, won’t attend our branch meetings even once or twice a year for an hour as they have to be in clinic, ‘to learn.’ and that is an actual quote by the PSN.

I have absolute faith in the Parkinson’s nurses and I prefer to see them rather than my consultant as they are more “hands on”. My Parkinson’s nurse has tweaked my medication and given valuable advice on how to cope with every day stuff. They train in neurology and specialise in neuro-related illnesses. If I need to contact them I can leave a message and someone always gets back to me within 24 hours.

Hi, thank you for your replies. With the limited experience we have had with our Parkinson nurse I question the degree of expertise, especially if not taking meds. They may be able to tweak dosage etc but that appeared to be, in our case, her sole function. In her words “Idon’t know how to help you” An awful lot of money for very little!!

Parkinson’s Nurses must admit my PD is great dianosed 2010, i have seen her every 6 months with odd appointments to see the main man. i felt she put me at ease, understood what we are going through, i feel that i can discuss any thing with her, she like an old friend. On my last visit my normal nurse was on a course, and I had to see another PD nurse, my driving licence was due for renewed. She ask for a day to day account how i felt, Answer sometimes i will have a nap during the day, Nurse put on her notes (some times wil fall asleep and not know,) This was not me, to cut a long story short she had not listend to a word that i had said i nearly lost my licence, but spoke to her again and she changed the wording on her letter. Now my own nurse would have ask more questions, don’t forget Yes PD Nurse’s are great but don’t let them rule you, you are still you .

Hi @benji,

Apologies for my delayed response to your query, I was waiting for my colleague to get in touch with me. To answer your question; Parkinson’s nurses have extensive knowledge of complex medical issues, coupled with the ability to adopt a holistic approach to the management of Parkinson’s. They have the capability to act as a catalyst for improvement in service delivery within the health economy. Parkinson’s nurses provide expert care because they only work with people with the condition.

In England services vary depending on whether the post is Acute or Community based. In Scotland, Wales and Northern Ireland any difference in practice is due to local agreements rather than the business models of the English NHS. Here are the definitions the different posts:

Acute based

  • Runs hospital based nurse led or joint clinics
  • Ward consultations
  • Home visits as appropriate usually for housebound or Palliative patients

Community based or CCG employed

  • Runs community based nurse led or joint clinics
  • Home visits

Neurology nurses

  • Usually covering large rural Geographical caseload rather than a disease specific one
  • Tend to be hospital based

Nurses with a special interest in Parkinson’s

  • Joint clinics with neurologist or geriatrician with an interest in Parkinson’s
  • 50% or less time dedicated to PD

What do i need in terms of education and training to apply for the role of a Parkinson’s Nurse post

There is no official training course for someone to become a Parkinsons Nurse, The list below is some of what would be expected in terms of minimum standards there are required for some

  • Minimum 3-5 years post registration experience
  • Skilled through training in treatment and management of Parkinson’s and
  • other allied conditions
  • Designated specialist clinical responsibility
  • Ability to co-ordinate and implement the whole strategy for Parkinson’s in
  • own area
  • Should have or be working towards a nursing degree or equivalent
  • Proven management experience
  • Nurse prescriber or commitment to undertake training

Nurse Prescribers

Not all Parkinson’s Nurses are able to advise, change or prescribe medication. There are very strict rules and guidelines around this and they must undertake the appropriate qualifications to do so. Once they have gained the qualification they must work within the agreed guidelines and competencies when advising, prescribing and changing medication.

If they are not a prescriber they must not advise, change or prescribe medication. The patient must be referred back to their consultant or GP to make the changes.

Key Parkinsons Nurse interventions

Parkinsons Nurse: -

  • Help to reduce unplanned admissions (anticipatory care)
  • Prevent unnecessarily extended hospital stays
  • Reduce the need for outpatient care
  • Help reduce outpatient waiting times
  • Empower and educate patients to become experts in their condition
  • Help integrate health and social care
  • Educate health and social care professionals about Parkinson’s along the patient’s care pathway.
  • Maintaining and improving quality of life for people with Parkinson’s

I hope this answers your question proficiently, however, if you have any additional questions, please let me know and I’ll pass it onto my colleague.

Best wishes,
Reah

Interesting as what their remit is and what they actually do.

Thanks Reah

1 Like

You’re welcome. :slightly_smiling_face:

Says it all.

This contradicts the above.

Hi @benji,

There is no formal qualification to become a Parkinson’s nurse; however, anyone taking on the role must be a qualified nurse to Degree or Masters level. They will build up their training and skill’s by attending specialist training course’s some are specific to Parkinson and others are not but all are important to ensure that they can provide the high quality holistic support to people with Parkinson’s, their carers and family members.

I hope this clarifies things further for you.

Best wishes,

Reah

Hi Reah,
Firstly all nurse training is at degree level and has been for a number of years.
My understanding is that they are paid on the grade levels 5-7, in money terms that’s between £45000 to£47000 . Lots of dosh , as the GP we saw this week said “they earn almost as much as me”
I have seen absolutly zero holistic support, high quality or otherwise.
The first appointment 6 months ago she said I don’t know what to do. When I asked for him to be referred to a speech and language therapist for swallowing and drooling problems plus speech problems. It never happened! After 6 weeks I had to refer him myself.
When I mentioned his severe weight loss, he’s 8 and a half stone, nothing
His lower legs, feet and ankles are like an elephant, “go and see your GP”
I asked about protection for occasional faecal and urinary night time accidents. She would refer us to an incontinece nurse. Hey guess what, still waiting!
He is virtually unable to walk, get in or out of a chair or climb stairs., needs help with dressing. No mention of aides OT input. Mind you maybe 6 months time she might “refer” us then!
So I’m afraid I return to the original reason for my post. Why are we paying for this inadequate crap! And paying a lot.
There may indeed be so e excellent nurses out there shame we are yet to meet one.

I must say how sorry I am with your wholly unsatisfactory experiences. My own experiences with PD nurses (and Consultant Neurologists) could not be more different. The Neurolgy nurse (there are three) have been brilliant, even interceding on my behalf when I had problems with my GP being reluctant to follow the “advice”, in other words clinical guidance/ instructions concerning medication.

hope you have more satisfactory experiences in the future

best wishes, cled

Hi, my experiences also with PD nurses and Neurologists have been excellent. They reply to me via email and I always get urgent appts as we try to see what meds I need in these first few years. I have had very strange internal tremors in my throat an they have been so reassuring. Have also been referred to Speech Therapy, Neuro Physio and Neuro Psychology. Thank you to Salford and Stepping Hill Hospitals x

Sadly my experience as well Mitch1.
Glad that others have found the support of PSN’s a help.

regards

Benji

Also a problem with hospital doctors designating themselves a Parkinson’s specialist when they just have ‘an interest in the condition’ and are not experts in this field or even neurologists, just geriatricians who treat ALL older patients with all sorts of condition, including stroke, and, in our case, a jack of all trades and seemingly a master of none!

Geriatric in their 60’s?