Health: Parkinson’s Disease

Baroness Masham of Ilton Excerpts

Monday 10th January 2011 Lords Chamber

[Baroness Masham of Ilton]

My Lords, I thank the noble Baroness, Lady Gale, for bringing this report on Parkinson’s disease to the notice of your Lordships. The noble Baroness is a dedicated chairperson of the All-Party Group for Parkinson’s Disease.

My late husband was diagnosed with Parkinson’s, along with other complicated conditions. He was diagnosed in London but, as we live in North Yorkshire, I found there was a lack of interest in that specialty when I tried to find a consultant in the north. We found one consultant in Leeds, which was a long distance from home, and a very helpful Parkinson’s specialist nurse. That perhaps illustrates from first-hand experience how the specialist care that is needed by people with Parkinson’s is patchy throughout the country, as is stated in the report.

Two years ago, a friend living in the North Yorkshire dales needed the expertise of a consultant with a special interest in Parkinson’s. I was pleased to find such a consultant in Leeds who visited a private hospital in Harrogate. I passed on this information and received a letter from the friend who said that he was very pleased with the consultant, whom he liked and found very helpful. When one has to have complex drugs, it is important that one can have trust and confidence in the consultant who is prescribing the drugs. When I read in the report that there are many people with Parkinson’s who never see a consultant it causes concern, as having expert advice makes all the difference to the patients and their partners or carers.

As I read my Christmas cards this year, I had one which said: “Maureen cannot write this card as she has Parkinson’s”. People with Parkinson’s need the help of expert doctors, nurses, physiotherapists, occupational therapists and speech and language therapists as well as social care. All have a part to play in the patient’s journey while living with Parkinson’s. There is concern among many people involved in patient care and groups of people living with long-term conditions that things may not get better when GP consortia are in charge. Can the Minister say what the terms and conditions of commissioning will be, and what will be the safeguards?

I congratulate Parkinson’s UK on pump-priming nurses for the first two years. I wonder how many trusts take on the services of these specially trained nurses and how many, after two years, do not. The report states that the role played by Parkinson’s disease special nurses in the care of people with Parkinson’s disease was strongly endorsed by submissions from people living with the condition, from carers and from those medical specialists working alongside nurse specialists. Many people with Parkinson’s disease and their carers outlined how Parkinson’s disease nurse specialists provided them with a regular point of contact for advice on all aspects of the condition and for adjusting their complex medication regimes. This service was particularly valued by the group. When individuals did not have access to a nurse specialist, it tended to be identified as the most significant service inadequacy. I should be grateful for the Minister’s views on nurse specialists.

A person with Parkinson’s said in the report:

“The biggest help has been specialist Nurses, bit of a life saver really, could not imagine coping without them”.

There is a great deal to do to make services better for all people living with Parkinson's disease: for those in care homes who are often neglected and for those who find help is not forthcoming or that there is a lack of joined-up working between health and social care. I hope this report will be read and used by many people. I have already sent it to someone in Yorkshire. I hope it will be used by health professionals, many of whom need educating about the needs of people with Parkinson’s disease. I hope that the Minister will help to make services better for these people who really need them.