Lyme Disease

Baroness Wheeler Excerpts

Thursday 22nd October 2015 Grand Committee

[Baroness Wheeler (Lab)]

My Lords, I, too, welcome the initiative of the noble Lord, Lord Greaves, in securing this debate, which we hope will play a helpful role in raising awareness and understanding about Lyme disease and facilitate the real progress and action that is obviously needed. Although we are talking about a relatively small patient population, it is important to underline that cases of the disease have quadrupled over the past 12 years, taking into account the latest NHS data and the fact that, as we have heard, many cases are not formally diagnosed or clear up without any treatment. It has been a comprehensive and expert debate and I look forward to the response from the Minister on the number of issues that have been raised. I do not intend to repeat them.

I also pay tribute to the work of Lyme Disease Action. Its developing work and improving relationship with the Department of Health and Public Health England is a sign of hope for the future and is to be welcomed and commended, as is its partnership with the Royal College of General Practitioners in working on, for example, online training for GPs. In particular, LDA’s help desk for patients and medics, helping to document cases, including test information, talking to laboratories about test results and offering GPs a conversation with the medical director, has led to the successful treatment of patients. Surely it is a model that needs to be taken forward across the NHS as it uses the expertise and knowledge built up by the LDA over many years and, if more widely adopted, would go some way towards addressing the lack of awareness about Lyme disease among many GPs and hospital doctors.

As we have heard, early treatment of Lyme disease is almost always successful but the best treatment in late-diagnosed cases is unknown and the resulting disability can become very severe and lasting with, frustratingly, no consensus on approach or treatment. I recently watched a DVD from the charity Canine Partners which showed how an assistance dog helped and supported a wonderful woman called Sue, who was diagnosed with Lyme disease 17 years ago and has suffered chronic fatigue, painful and stiff joints and muscle and back pain since then. I watched it because my partner had a major stroke seven years ago and he has an assistance dog, so I know first hand how helpful and vital assistance dogs can be for people with disabilities in supporting their independence. It would be good if we could all see that DVD now because it underlines the terrible cruelty of the disease for patients in the chronic state. Sue’s assistance dog is trained to wake her up in the morning because her extreme fatigue means that she has no time awareness of how long she has been sleeping; and, if she needs to rest during the day, the assistance dog is trained to keep an eye on her. It supports her in so many ways—by passing clothes to her for dressing, picking up the phone and so on. It is very good to watch that DVD, which shows the impact this terrible disease can have.

Noble Lords have commented on recent press coverage. One of the articles I read as background to this debate commented that,

“few diseases have aroused more emotional attention in the press and the public than Lyme disease”.

We saw this in the recent publicity, with the all main problems identified: the ongoing problems with diagnosis; patients going to private clinics for tests or travelling abroad to seek tests not available in the UK, or desperately searching for countries with greater knowledge and expertise on the disease than in the UK; and the firm conviction by patients that the disease can be transferred from human to human despite the strong scientific evidence so far that it cannot. These patients all felt that treatment for the disease had not worked for them and that is important. The major themes of this debate are about the overwhelming need for more data and research and I look forward to the Minister’s response on that.

On the issue of guidance for UK health professionals, I understand that there is a general acceptance by both PHE and LDA of a need for guidance for health professionals covering secondary care in particular. What discussions has the Department of Health had with PHE and NICE on this and can the Minister commit to ensuring that a work programme and timetable for such guidelines is produced in the near future?

I was interested to learn from someone who has a particular interest in the provision of specialised care—I do not have time to say why—that paediatric Lyme disease is within the scope of specialised commissioning whereas adult Lyme disease appears not to be. Can the Minister shed any light on the background and reasoning behind this situation and agree to look into the matter?