Personal Health Record

Personal Health Record

Contents Section 1: Personal details (pages 4 6) Within this section you can note all information about you, next of kin, important health information and general medical history. Section 2: Medication (pages 7 10) This section allows you to keep a record of your previous and current Parkinson s medication. Please complete the Parkinson s medication history section to the best of your ability and use the Current medication table to keep an updated record of medications. You can also keep a copy of your current medication prescriptions and store your medication information sheets or lists of how you take your medications in this section. Section 3: Parkinson s and Parkinsonism (pages 11 14) This section gives you information on Parkinson s and Parkinsonism, the Patient Pathway and your main health/social care contact details and useful contacts. Section 4: Appointments (pages 15 16) This section allows you to log all of your appointments. Use the Questions to ask section to note any areas or questions you want to discuss with your healthcare professional. Section 5: Letters and Management plan (pages 17 19) You can store copies of your consultant s or Parkinson s Disease Nurse Specialist s letters (which will outline your management plan) in this section, as well as, information or advice given to you from other healthcare professionals, such as your physiotherapist, occupational therapist, dietitian or speech and language therapist. Over time you will receive information related to your Parkinson s which you can store here. A list of information leaflets and booklets produced by Parkinson s UK can be found here. Section 6: Planning for the future (page 20) Parkinson s disease is not a terminal illness however there are challenging aspects of the condition which some may experience and wish to plan for. This section can be used to hold written documentation of your wishes regarding treatment and place of care. Section 7: Glossary (pages 21 22) If there are any medical terms that you do not understand please use this section and ask your nurse or consultant to write these down for you. 2

Introduction This is your Parkinson s disease Personal Health Record which contains relevant details about you and your condition. A plan for your care will be discussed at each consultation and documented in the GP letter. This record contains information about: Parkinson s Disease and the Patient Pathway Your health and treatment Advice from Specialist Health Care Professionals Information you wish to record Please take your Personal Health Record with you when you visit Any hospital appointments Your G.P. Surgery Your Parkinson s Clinic - Clinics are held at: - Nithbank Rehabilitation Unit, Dumfries Annan Hospital, Annan Galloway Community Hospital, Stranraer The hospital emergency department / admission to hospital Any other health clinics Guidelines for use by Health Professionals This record does not replace professional documentation. The purpose of this document is to: Provide patients with ownership of their own information Promote continuity of care Improve communication between all Health Care Professionals All entries require to be written legibly The document is the patient s property. 3

Section1 - Personal Details Name: Address:... Contact number: CHI: Next of kin name: Relationship: Contact number: Alternative contact name: Relationship: Contact number:.... 4

Important information I was diagnosed with Parkinson s on I was diagnosed with Parkinsonism on I was diagnosed with Multiple System Atrophy on (date). (date)... (date). I was diagnosed with Progressive Supranuclear Palsy on (date). I was diagnosed by (name of consultant). I have had a SPECT scan No Yes (date) My allergies are: I have informed the DVLA that I have Parkinson s - Yes No I would like to receive copies of my clinic letters - Yes No Signed Date Medication Please note: People with Parkinson s / Parkinsonism should avoid the following medications: - Metoclopramide (maxolon) Prochlorperazine (stemetil) Haloperidol Treats nausea and vomiting Treats nausea, vomiting and vertigo Treat symptoms of psychosis e.g. hallucinations, agitation, confusion When being admitted to hospital please bring in your own medication Parkinson s medication should not be stopped suddenly. 5

General Medical History Condition & Date (approximately): 6

Section 2 - Current Medication This is the medication (prescribed and bought over-the-counter) you are currently taking: Please refer to page 5 note on medication Drug name and strength Dose (no. of tablets, capsules, puffs, drops or spoonfuls) How often is the medication taken? Are you still taking regularly? 7

Current Medication / continued This is the medication (prescribed and bought over-the-counter) you are currently taking: Please refer to page 5 note on medication Drug name and strength Dose (no. of tablets, capsules, puffs, drops or spoonfuls) How often is the medication taken? Are you still taking regularly? 8

Parkinson s Medication History Previous Parkinson s medications taken and now discontinued: Name of medication Reason for stopping and when: 9

Useful information for health professional to know Subject Eyesight Action Glasses: Hearing Aids: Memory Aids: Medication Independent: Assistance from: Blister pack: Mobility Aids: Speech Swallowing Personal care Independent: Assistance from: Carers: Guardianship Advance Directive / Living Will: Financial Power of Attorney: Welfare Power of Attorney: Language 10

Section 3: Parkinson s and Parkinsonism? What is Parkinson s? Parkinson s is a progressive and fluctuating neurological condition. It occurs when nerve cells die in an area of the brain that controls movement. These nerve cells produce dopamine, a chemical messenger that enables us to perform co-ordinated movements by transmitting messages between nerve cells and muscles. The exact cause is unknown although we do know what happens to the brain as a consequence. There is a wide range of effective treatments, including medications and therapies (e.g. physiotherapy) to treat the symptoms of Parkinson s. Parkinson s has three main physical features: 1. Tremor - shaking usually begins in one hand or arm and is more likely to occur at rest. Around 70% of people with Parkinson s have a tremor. 2. Muscular rigidity or stiffness - this is a common early sign. People may experience problems turning around, getting out of a chair, turning over in bed, or with fine finger movements such as writing or fastening a button. Some people find their posture becomes stooped or that their face becomes stiff, making facial expressions more difficult. Stiffness may affect many everyday tasks and can sometimes be painful. 3. Slowness of movement (bradykinesia) and lack of spontaneous movement (hypokinesia) - often initiating movements becomes more difficult or it can take longer to perform movements. Lack of co-ordination when moving can also be difficult. In addition to these three main (motor) symptoms, there may be a range of other non-motor symptoms such as tiredness, depression, anxiety, a loss of confidence, and difficulties with speech and sleep. These symptoms and their nature vary for each person. You can request more information as symptoms or problems arise. What is Parkinsonism? Parkinsonism describes the features of slow movement, muscular stiffness and tremor. These are not always caused by Parkinson s disease but can result from taking certain medications, changes to the small blood vessels in the brain or rarer conditions such as Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA) or Dementia with Lewy Bodies (also known as Lewy Body disease) (DLB) Further information on these conditions, drug induced parkinsonism and Cerebrovascular Parkinsonism is available. Please ask your Parkinson s Specialist Nurse. 11

Parkinson s Disease (PD) Patient Pathway Dumfries and Galloway Patient attends GP Patient attends hospital Dr. Referral entered onto SCI gateway Letter dictated & typed Referral received at contracts & printed Internal referrals sent by internal post All referrals received by secretary Passed to consultant for triage then returned to secretary Appointment booked and letter sent to patient Discharge letter typed & sent to referrer PD excluded Patient receives and attends appointment with consultant / associate specialist Patient receives & attends appointment; return to specialist Referred for CT/MRI scan Further investigation required Outcomes: Referred for SPECT scan in Glasgow Contact made with PD nurse Patient possibly / probably has PD Patient & carer attend for review appointment Referral to MDT as required 12 Review with PD team throughout disease progression

Health & Social Care Contacts: Dr G Rhind (Consultant Physician with a special interest in Parkinson s Disease) Contact via the secretary Dr S Donaldson (Associate Specialist) Contact via the secretary Susan Coull (Parkinson s Disease Nurse Specialist) Monday Friday 9am-5pm Tel: 01387 241909 Email: susan.coull@nhs.net Angela Haining (Secretary) Tel: 01387 241349 Ann McCracken (Secretary) Tel: 01387 241845 Name, address and phone number of GP. Name, address and phone number of dentist. Name, address and phone number of pharmacy. District Nurse Name:... Tel:.... Social Worker/ Care Co-ordinator Name:... Tel:.... Physiotherapist Name:... Tel:.... Occupational Therapist Name:... Tel:.... Speech & Language Therapist Name:... Tel:.... Dietitian Name:... Tel:.... 13

Useful Contacts Parkinson s UK, Vauxhall Bridge Road, Victoria, London SW1V 1EJ Helpline: 0808 800 0303, (Monday to Friday 9am - 8pm, Saturday 10am - 2pm) Email:enquiries@parkinsons.org.uk www.parkinsons.org.uk Parkinson s UK (Scottish Office), Forsyth House, Lommond Court, Castle Business Park, Stirling FK9 4TU Tel/Fax: 01786 433811 Parkinson s UK Information & Support Worker Steven Richardson 0844 2253744 Email srichardson@parkinson.org.uk Parkinson s UK Annan Branch Meets Sept to June at the Community Project Hall, Nursery Place, Annan on the last Tuesday of each month from 2pm to 3.15pm Margaret Trail 01461 204855 Pearl Pascoe 01461 700214 Sheila Gardiner 01461 202146 Parkinson s UK Dumfries Branch Meet Sept to June at the Heathhall Community Centre, Barnett Road, Dumfries on the third Monday of the each month from 2pm to 4pm Sadie Tait 01387 265764 Ailsa Gillett 01387 252989 Parkinson s UK Stewartry Support Group Meets Sept to June at Merse House, Kirkcudbright, on the third Tuesday of each month from 2pm to 4pm Rosemary Twiss 01556 611760 Margaret Henderson 01556 611000 Jacqueline Campbell 01557 814488 Parkinson s UK Stranraer Support Group Meets Sept to June at the North West Castle Hotel, Stranraer on the third Monday of each month from 11am to 1pm Tom McKail 01776 706419 14

Section 4- Appointment Log Name of health professional Date 15

Questions to ask It may be helpful to note down any questions you d like to ask your healthcare professional at your next visit. 16

Section 5 - Letters and Management Plan Topic Discussed: Information given: Plan: Signed:.. Topic Discussed: Date Information given: Plan: Signed:.. Topic Discussed: Date Information given: Plan: Signed:.. Topic Discussed: Date Information given: Plan: Signed:.. Date 17

Parkinson s UK Information Sheets (please let us know if you would like any of these) Anaesthesia & Parkinson s Antioxidants & Parkinson s Anxiety & Parkinson s Apomorphine Carer s allowance Clothing Co-enzyme Q10 Communication & Parkinson s Compulsive behaviour & Parkinson s Computers, the internet and useful websites Conductive education Cytoplasmic hybrid cells Deep brain stimulation Dementia & Parkinson s Depression & Parkinson s Disability Discrimination Act 1995 Eating, swallowing and saliva control in Parkinson s Ecstasy & Parkinson s Equipment & disability aids Falls & Parkinson s Fatigue & Parkinson s Foot care & Parkinson s Freezing in Parkinson s Gambling & Parkinson s Genetic testing Gene therapy for Parkinson s Going into hospital Hallucinations & Parkinson s Hypersexuality & Parkinson s International travel & Parkinson s Keeping a diary: for carers Keeping a diary: people with Parkinson s Living alone with Parkinson s Low blood pressure & Parkinson s Mild memory problems & Parkinson s Motor fluctuations in Parkinson s Muscle cramps & dystonia Occupational therapy & Parkinson s Pain in Parkinson s Parkinson s & eyes Physiotherapy & Parkinson s Pregnancy & Parkinson s Restless legs syndrome & Parkinson s Retiring abroad with Parkinson s Skin, scalp and sweating problems in Parkinson s Sleep and night-time problems in Parkinson s Speech & Language Therapy Stem cell research Talking to children about Parkinson s 18

Talking to your doctor Looking after your bladder & bowels in Parkinson s Parkinson s & diet Surgery & Parkinson s The Carer s guide Telling people about Parkinson s Tremor & Parkinson s Writing & Publishing Parkinson s UK booklets: Complementary therapies & Parkinson s Driving & Parkinson s Drug treatments for Parkinson s Employment guide Intimate relationships & Parkinson s Keep moving exercise & Parkinson s (also DVD) Living with Parkinson s 19

Section 6 Planning for the future Signs and symptoms Action to be taken My priorities and preferences for future care are: Signed: Date: 20

Section 7 - Glossary You can ask your healthcare professionals to write down and explain here any medical terms they may use which you do not understand. Medical term Neurological condition Basal ganglia Dopamine Idiopathic Bradykinesia Tremor Rigidity on/off syndrome Wearing off Freezing Dystonia What it means Affects the body s nervous system The large grey matter beneath the cerebral cortex in the brain, which deals with the programming of normal movements A chemical messenger produced by cells in the brain s substantia nigra. It transmits messages from the brain to other parts of the body, particularly those involved in the co-ordination of movement Used before the name of an illness or medical condition to mean its cause is not known, e.g. idiopathic Parkinson s Slowness of movement Involuntary shaking, trembling or quivering movements of the muscles. It is caused by the muscles alternately contracting and relaxing at a rapid pace The name given to the special type of stiffness that is one of the main symptoms of Parkinson s. The muscles tend to pull against each other instead of working smoothly together Describes the abrupt and unpredictable changes in mobility of some people with long-standing Parkinson s, who take Parkinson s medication. In the on state, they can move and in the off state they can be virtually immobile and can switch from one state to the other in minutes or even seconds An effect experienced by many people with long standing Parkinson s. The duration of benefit from a single dose of the drug treatment is reduced so that it wears off before the next dose is due. A symptom common in Parkinson s that causes the person to stop suddenly while walking and be unable to move for several seconds or minutes Involuntary contraction of the muscles that causes the affected part of the body to spasm 21

Glossary continued Dyskinesias Levodopa Agonist An involuntary or abnormal movement affecting any part of the body. Often caused by some anti-parkinson s drug treatments Also known as L-dopa, though levodopa is how it s commonly referred to now. A natural amino acid that the brain converts into dopamine to replace the missing chemical A term used for drugs that have a positive effect on particular cells of the body, e.g. dopamine agonists stimulate the parts of the brain where dopamine works 22

Produced by Parkinson s Healthcare Team (Sept. 2011) Review date 2013 23