Parkinson’s Local Adviser
People with Parkinson’s (PwP) and their carers and families face a lot of change, and it may be difficult to know where to turn to ask for help. PwP may try Jill Cockett who will provide support, information and advice on anything to do with living with Parkinson’s, and is happy to talk to carers and family members as well as people who have been diagnosed with Parkinson’s. There are many booklets and factsheets she can send. What is discussed and any action that is planned is entirely up to the patient, and the service is confidential and free to use.
Parkinson’s UK Local Adviser, Jill Cockett: 0808 800 0303
Parkinson’s NHS Nurses in the Community
The role of the local area NHS Parkinson’s Nurses is varied. With only 3 nurses and 1 support nurse presently looking after over 1,000 patients in the Cambridge area, resources are stretched at best. With this in mind, these following points explain the normal procedure for home/clinic visits and verbal communication with the Nurses:
1. Referral process.
Upon initial referral, nurses receive a letter from either the hospital consultant or GP. The nurses then determine the urgency of the referral and allocate an appointment at the best location for the individual. This could be at home or at a local clinic. Although nurses are expected to see people within 18 weeks of referral, they often see patients much sooner according to each individual’s need. If the patient has seen a consultant, it is possible that they are still under their care and may even have been seen recently; cases like this may be deemed a lower priority. The nurses will prioritise people who are having more complex problems.
2. Initial appointments and groups.
At the first appointment the nurses will answer any questions from the individual and discuss management of their condition. They also provide lifestyle advice, including dietary advice, exercise regimes, relaxation and how to cope with telling others about the diagnosis. They may then ask a series of questions to help identify any specific problems that need addressing. However, sometimes the whole consultation may simply comprise listening to the person and helping them come to terms with the news, particularly if the person is very distressed.
Nurses also encourage people to consider attending information and exercise groups. If patients agree to attend these sessions, they are expected to attend if at all possible, as places are limited. If individuals are unable to attend, a message can be left on the office phone number (below) and this will be relayed to those who run the groups. Advice on Parkinson’s UK is also provided.
3. Sharing care.
Some patients see the consultant at the hospital and may only see Parkinson’s nurses at diagnosis or approximately once a year. Others may see the consultant and nurse alternately. There are people who may have been seen by the consultant and are now stable – these people are referred to the nurse-led clinics at locations closer to home. If a problem arises which requires a medical review, the nurses can make contact with the consultant to arrange this.
4. Contact and support
Individuals are actively encouraged to call Parkinson’s nurses if they need advice or if there are any changes to treatment that require monitoring. The department should receive notification of hospital consultations; however, there is often a delay before this is received, so, if assistance is required sooner, individuals are encouraged to contact the nurses:
By email on cpm-tr.Parkinsons@nhs.net.
Or through the Nurses’ Admin office on 0330 726 0077 choose option 2. Ask for the “Parkinson’s administrator” who will leave a message for the appropriate team. The admin hub is open from 8am to 5pm weekdays. The nurses are often in clinics, travelling, or seeing people in their homes. For this reason it may take a while for one of them to return a call. It is helpful to convey how urgent your call is and the nature of your enquiry. The admin staff will then act on this information.
5. Non-Parkinson’s Conditions
On occasion people call about health matters that are unrelated to Parkinson’s. If another healthcare professional is overseeing your treatment or has provided a prescription for non-Parkinson’s related conditions it is better to discuss any concerns with them in the first instance.
The Parkinson’s nurses are there to help you manage your Parkinson’s, therefore it is not appropriate for them to comment on treatments for other conditions – particularly if you are under the care of another professional
Most feedback about the specialist nursing service is excellent. However, there may be times when things are not going well, in which case people are actively encouraged to make contact and express their concerns; only then can the service be improved. Contact PALS (the Patient Advice and Liaison Service) who will deal with your enquiry and contact the necessary service.
Telephone 01223 216756, Email PALS@addenbrookes.nhs.uk
Addenbrooke’s NHS Hospital Parkinson’s Specialist Nurses
There are currently 2 Parkinson’s Specialist Nurses based at Addenbrooke’s Hospital in Cambridge. They work across all the wards in the hospital and review patients with a diagnosis of Parkinson’s who are admitted. They ensure that patients with Parkinson’s get the services they need during their hospital stay and are able to give advice on Parkinson’s symptoms. They also ensure that medication is prescribed accurately on admission and taken on time.
Those due to be admitted to Addenbrooke’s for a procedure, should feel free to contact the Parkinson’s nurses prior to admission for advice. It is useful for them to know prior to admission what medications a patient is taking (bringing an up-to-date record of prescribed medications on admission is also useful).
Addenbrooke’s runs a ‘Get it on Time’ campaign in the hospital, led by the Parkinson’s Nursing team; nursing staff on the wards are trained about the importance of getting Parkinson’s medications on time; they are also supplied with a ‘Get it on Time clock’ which is displayed by the bed (with permission) and highlights the times medications are due. This is very beneficial. Self-administration of medications is advocated where the patient is able. Please do not hesitate to ask about this on the wards.
Addenbrooke’s nurses are also able to answer queries relating to deep brain stimulation, Duodopa, and Apo-morphine treatments.
The nurses link closely with consultants who specialise in treating Parkinson’s and also with Parkinson’s Specialist Nurses in the community. But note: Addenbrooke’s Parkinson’s nurses are based purely on the wards, so are unable to carry out home visits or nursing clinic appointments. Speak to the local community team should these be required.
The team’s contact telephone number at Addenbrooke’s Hospital is 01223 349814 (Monday-Saturday, working hours – excluding bank holidays) and every effort is made to reply to messages within 48 hours.
Contacts for Carers (not specifically Parkinson’s)
Carers Trust Cambridgeshire
This organisation can help alleviate the burden of caring by arranging time off for carers. Some care can be free under certain circumstances. They can also organise emergency respite for the cared for person should the carer be taken ill (known as the ICER scheme). Call 0345 241 0954 or 01480 499090 to see how they can help.
Carers’ Information Service: Carers Direct
The Department of Health has launched a telephone advice line and online information service for carers in England. Carers Direct includes information on a range of topics including benefits and links to local services and support. Visit www.nhs.uk/carersdirect
A freephone Carers Helpline is available seven days a week and the number is 0300 123 1053. The helpline is open from 9am-8pm Monday to Friday, and from 11am-4pm at weekends
Help With Care Choices
There is a useful book which gives information about the availability of Care of all types in Cambridgeshire. The address of its website is www.carechoices.co.uk It can be consulted on-line and information is given for each county.
Care Choices provides free public information services to assist in your search for care information. There are two services:
For care of disabled adults (16 – 64) there is the Disabilities Care Register.
For care of the elderly there is the Care Select Helpline Service.
Through the completion of a short questionnaire they are able to provide you with a short-list of appropriate care providers that meet your requirements and preferences. Both services can be accessed calling the helpline on 0800 389 2077 or online.
The Parkinson’s Volunteer Co-ordinator
The role of the Volunteer Co-ordinator is to recruit and inspire people to volunteer their time, skills and energy for Parkinson’s UK, and to support them in whatever role they play. At the local level the VC is the direct P-UK staff contact for local groups, recruiting volunteers for group roles, supporting them, and helping them to understand the Charity’s requirements.
**This information is updated 11 November 2021**