'Please, write to me' guidance: best practice example letters for patients with Parkinson's

The Academy of Medical Royal Colleges’ (the Academy) 'Please, write to me: writing outpatient clinic letters to patients guidance advises clinicians to write outpatient clinic letters directly to patients, aiding both patients and GPs in understanding the information.

Read the full guidance here. 

Parkinson's UK developed these letters for the Academy's revised guidance, with input from Parkinson’s nurses, people with Parkinson’s, and a GP.

Written to the patient

7 January 2025

Mrs Jane Smith

1 The Street

Tamworth

Staffordshire

B79 1ZZ

Re: Jane Smith, DOB 01/01/1954, NHS Number 123 234 4567, PID N123456

1 The Street, Tamworth, Staffordshire, B79 1ZZ

Nurse-Led Clinic - Stuart Blair, Parkinson’s Nurse Specialist, 4 January 2025

Diagnoses:

Tremor dominant Parkinson's

Current Medications:

Sinemet 25 mg/100 mg three times a day 07:30 am, 1:30 pm and 6:30 pm

Ramipril 2.5 mg capsules once daily

Dear Mrs Jane Smith,

It was a pleasure to meet you and your husband Joseph today in the clinic. We discussed the recent Parkinson’s diagnosis you received from your doctor.

I was sorry to hear you hurt your knee and hip in November. Since then you started taking a higher dose of your medicine, Sinemet. I am pleased that taking a higher dose of medicine has helped you to move around more easily.

I am pleased to hear you are active and have a personal trainer. I told you about ways you could reduce your risk of falls. I will refer you for help with adapting your home for this. You said you did not need to see neurotherapy for now as you feel able to exercise.

You completed a test to check your cognition, and it showed no problems with your cognition.

I said you could take your evening dose of Sinemet earlier. I suggested taking it at either 6.30pm or 7.00pm. I said you should drink water when taking your medicine, and this might help you to avoid feeling dizzy.

We talked about the different symptoms of Parkinson’s and that some affect your movement while other symptoms may affect other parts of you. I also told you that some people taking your medicine can experience changes in behaviour, including development of repetitive behaviour. I said this could include online shopping, gambling, internet use and sexual behaviour. It is important to tell a doctor or nurse if this happens to you.

I also told you that when you are diagnosed with Parkinson’s you must inform the Driver and Vehicle Licensing Agency (DVLA) or Driver & Vehicle Agency (DVA) straight away as this is a legal requirement.

You received our service information leaflet when you were diagnosed. I also showed you the Parkinson's UK website. You can find exercise classes near you for people with Parkinson’s on the website.

Please contact me via 0121 333 4444 if you have questions.

Yours sincerely,

Stuart Blair

Parkinson’s Nurse Specialist

Information for GP

Test results awaited:

None

Medication changes:

No changes to the Parkinson's medications for now. We would be grateful for the GP to prescribe laxatives as needed.

Plan: We will refer her to Adult Care Services for an assessment for home adaptations.

cc. Dr G Practitioner

The Medical Centre

Tamworth

B79 1XX

Written to the GP

7 January 2025

Dr G Practitioner

The Medical Centre

Tamworth

B79 1XX

Re: Jane Smith, DOB 01/01/1954, NHS Number 123 234 4567, PID N123456

1 The Street, Tamworth, Staffordshire, B79 1ZZ

Nurse-Led Clinic - Stuart Blair, Parkinson’s Nurse Specialist 4 January 2025

Diagnoses:

Tremor dominant Parkinson's

Current Medications:

Sinemet 25 mg/100 mg three times a day 07:30 am, 1:30 pm and 6:30 pm

Ramipril 2.5 mg capsules once daily

GP Action:

No changes to the Parkinson's medications for now. We would be grateful for the GP to prescribe laxatives as needed.

Community Clinic review in 4-6 months.

Plan:

We will refer her to Adult Care Services for an assessment for home adaptations.

Dear Dr Practitioner,

I met Jane today during this face to face nurse-led clinic appointment. She was referred by Dr Bob Jones, Consultant Neurologist to discuss Parkinson's and obtain further support regarding her recent Parkinson's diagnosis.

Jane came in with her husband, Joseph who she lives with. They share two grown-up children and three grandchildren. She retired from work in finance in 2022

We discussed motor and non motor symptoms. We reviewed the Non Motor Symptoms Questionnaire that Jane had completed.

Jane increased the dose of medication as per Dr Jones’ letter on 12 December 2024. Initially she felt slightly nauseous on taking the medications, but apart from that she has tolerated it, which is reassuring. She takes her medication at 7:30am, 1:30pm and 10:30pm and I advised her to take the evening dose a bit earlier probably around 6:30pm or 7:00pm so that she could maximise the effect of the medication. We discussed the importance of taking medications on time and that these medications are deemed to be time critical and I explained to her that it is best they are taken at consistent times.

She had a fall in November and she hurt her hip and knee; however, she was still on the lower dose of the medication at that time. Since increasing the medication, she noted that her mobility has much improved. We talked about fracture risk and reduction and I explained to her that fractures reduce the quality of life of a patient. Wearing appropriate footwear is advised. The patient undertakes moderate exercise.

We talked about whether she is happy to be referred to neurotherapy, but at the moment she does not think she needs this given that she is already active in terms of her exercise.

We also completed a Montreal Cognitive Assessment (MOCA) test today, and she scored 29/30 and there are no signs of any cognitive impairment. We discussed medication options, and she knows that there are multiple medications that are available to use for patients with Parkinson's.

We also discussed the distinction between non motor symptoms and motor symptoms of Parkinson’s and completed the Non motor symptoms questionnaire (NMSQ). We discussed impulse control disorder in patients with Parkinson's especially when taking Parkinson's medications and I have given them the leaflet from Parkinson's UK to inform them about this. We discussed that there is a risk with online shopping, internet use, hypersexuality, gambling in some cases, and it is very important to monitor this, and I have discussed this with her husband as well who was in the room during the consultation.

We also discussed the legal requirement to inform the Driver and Vehicle Licensing Agency (DVLA) or Driver & Vehicle Agency (DVA) once a Parkinson’s diagnosis has been received.

I have shown them the Parkinson's UK website and how to use their postcode to check which other activities they can join in terms of exercise groups and I have given them the anticipatory care leaflet and the Parkinson's nurse's service leaflets as well.

She will approach you, her GP if she has any problems with constipation for her to be prescribed laxatives as needed.

Please contact me via 0121 333 4444 if you have questions.

Yours sincerely,

Stuart Blair

Parkinson’s Nurse Specialist

Copy to:

PRIVATE AND CONFIDENTIAL

cc. Mrs Jane Smith

1 The Street

Tamworth

Staffordshire

B79 1ZZ